Patient & Family Hospice Orientation THE CARE YOU NEED, THE SUPPORT YOU DESERVE.

Transcription

1 Patient & Family Hospice Orientation THE CARE YOU NEED, THE SUPPORT YOU DESERVE.

2 WELCOME & PHILOSOPHY Keystone strives to extend the highest level of service through innovative care models and holistic approaches to ensure patients and their families receive the comfort and care they deserve. Keystone Values: Compassion- Cultivating a team culture that genuinely values compassion Respect- Maintaining an environment that fosters respect amongst the team Dignity- Recognizing that patients are on a sensitive journey and more importantly that each person we care for has different needs. Anything it takes: Keystone will go the extra mile to provide comfort and this is why, in addition to traditional hospice, everyone is offered Complementary medicine modalities. Veterans: Keystone is grateful for the sacrifices made by our Veterans and their families and are committed to repaying that debt. Hospice is not usually a place, but a supportive level of care given at the end of life. It s offered in many settings such as in home, assisted living facilities, nursing homes, and adult foster homes. A hospice team helps patients and families make informed decisions about care giving, teaches caregivers the necessary skills for hands-on care, and handles challenges associated with end of life care. Hospice also offers spiritual and social assistance through the family s bereavement period. Keystone Hospice is a private, independent, locally owned program. The Keystone team is committed to ensuring Idahoans receive outstanding hospice care. This booklet was created to help you better understand hospice care. If you have additional questions, please do not hesitate to ask us. Best regards, Lenny and Marianne Jensen Owners, Keystone Hospice This hospice is in compliance with Title VI of the Civil Rights Act of 1964, with Section 504 of the Rehabilitation Act of 1973 and with the Age Discrimination Act of We do not discriminate on the basis of race, color, religion, sex, national origin, age or disability with regard to admission, access to treatment or employment. We will make every effort to comply with these and similar statutes.

3 Keystone Hospice is available 24 hours a day, seven days a week: Keystone Hospice Office hours are 8 am - 5 pm, Monday - Friday. AFTER HOURS SERVICES A registered nurse is available 24 hours/day, 7 days a week to assist you with urgent issues after regular office hours, on weekends and holidays. Your after hours call to our office will be answered by our answering service who will immediately page a Keystone team member. The on-call staff will return your call and determine your needs. When appropriate, a nurse will come to your place of residence. Should you call 911 without our authorization, charges may not be a covered hospice expense. The following is a list of some reasons for which you may need to contact Keystone after regular hours. Please keep in mind, Keystone staff does not carry medications, and are unable to administer medications unless ordered by the physician. EXAMPLES OF COMMON AFTER HOURS CALLS Pain that does not respond to pain medication on hand New labored breathing New onset of agitation or restlessness Falls where possible injury has occurred No urine in 8 hours associated with discomfort Uncontrolled nausea, vomiting, or diarrhea Uncontrolled bleeding Temperature above 101º that does not respond to Tylenol (Patients on chemotherapy may be instructed to call before taking Tylenol.) Unable to wake patient up (new problem) Catheter leaking Chest Pain Patient taken to the hospital Patient dies at home, in the hospital or a nursing facility PROBLEMS THAT ARE HANDLED DURING REGULAR OFFICE HOURS In addition to all of the above: Narcotic refills Messages for the primary nurse: Examples include requests for supplies, scheduling needs and requests for staff visits etc. Calls for social worker, chaplain, or other hospice staff Questions regarding lab or blood work results Messages for Hospice Aide regarding visits, supplies, etc.

4 TABLE OF CONTENTS I. Hospice Overview...3 II. Notice of Privacy Practices for Protected Health Information...13 III. Advance Directives...17 IV. Basic Home Safety and Infection Control...19 V. Consumer Emergency Preparedness Plan VI. Durable Medical Equipment...28 VII. Pain Management VIII. Medication Teaching Guide...36 IX. Complementary Therapies...40 X. Preparing for the Dying Process...43 XI. Grief...46 XII. Admission Paperwork...48

5 3 SECTION I. HOSPICE OVERVIEW POLICIES This book contains general information regarding your rights and responsibilities as a patient. As state and federal regulations change, there may be additions or changes to this book as necessary. Keystone s complete policy and procedure manual regarding your care and treatment is available upon request for your viewing at the agency office at any time during normal business hours. CRITERIA FOR ADMISSION Admission to Keystone s hospice program is made upon recommendation of your physician, family, caregiver, or nursing home/assisted living employee. Normally, appropriate candidates for hospice are patients who: Have a life expectancy of 6 months or less (if disease runs normal course) Desire palliative treatment instead of curative Are tired of going to the hospital or emergency room Are experiencing pain or are in fear of pain or other symptoms Need financial relief from medications, equipment and supplies used for a their terminal diagnosis Want to stay at home as long as possible Want to maintain dignity and be as pain and symptom free as possible Would like assistance with emotional, social, and/or spiritual needs Desires bereavement help for friends and/or family On admission, our nurse will visit you and/or your family to discuss hospice services, assess your immediate needs and recommend a plan of care. If we cannot meet your needs, either directly by our hospice or indirectly through service agreements with other providers, we will not admit you or will not continue to provide services to you. HOSPICE CONCEPT WHAT IS HOSPICE? Hospice care provides clinical professionals supplies, equipment and medications to alleviate symptoms associated with terminal diagnosis. You and your family s medical, social, emotional, and spiritual needs are addressed by an experienced team of hospice professionals and volunteers. Hospice care provides comfort and kindness to those persons nearing the end of life s journey. Hospice will help you make decisions about how and where you want to spend the rest of your life. Hospice coordinates with your primary care physician regarding medications, equipment and supplies to assist in your care.

6 4 WHY HOSPICE? The team of medical professionals assembled for hospice care are highly specialized in end of life issues. Keystone chaplains and social workers are highly experienced in working with social, emotional and spiritual concerns, as well as with different family dynamics that tend to come to light during end of life. Hospice staff, including nurses, are available 24 hours per day, every day of the year, for urgent issues and emergencies that arise. Hospice considers your entire family, not just you, as the unit of care. You and your family are included in the decision making process. Hospice will help you and your family make choices about end-of-life issues and enable you to have greater control over these choices. Bereavement counseling is provided to your family for up to one year after your death. Hospice offers palliative, rather than curative treatment. Hospice will provide care and comfort when cure is no longer an option. Through ever advancing technology, pain and symptom control will enable you to live as fully and comfortably as possible. Hospice emphasizes quality, rather than length of life. Hospice neither hastens nor postpones your death. It affirms life and regards dying as a natural and normal part of the life process. SERVICES Hospice services include those of Nursing, Medical Social Work, Therapy Services, Chaplain, Hospice Aide, Nutrition Support, Volunteer Services and Bereavement. All services are provided under the direction of the primary care physician and/or the Hospice Medical Director. Arrangements will be made for needed medical supplies and equipment as appropriate. LEVELS OF HOSPICE CARE Routine Home Care: Care is provided intermittently by hospice team members in the patient s or family s place of residence. General Inpatient Care: Care is given at a contracted facility for patients who need pain control or acute/chronic symptom management. Paid length of stay for inpatient care and necessity of inpatient care will be determined by the hospice Interdisciplinary Team. If a hospice patient needs hospitalization for any reason unrelated to the terminal diagnosis, Medicare Part A will be utilized. Inpatient Respite Care: Under the direction of the Hospice Plan of Care, up to five (5) days of respite care at a contracted nursing care facility will be paid by hospice. This benefit may be used to give the family/caregiver a rest and the patient does not need to meet acute care standards. Continuous (crisis) Home Care: Care to be provided only during periods of crisis to maintain the patient at their place of residence (home, ALF, nursing home, adult foster home, etc). Criteria for continuous home care are the same as general inpatient care. Hospice staff will provide a minimum of eight (8) hours of care per calendar day.

7 5 MEDICARE HOSPICE BENEFIT Medicare will reimburse the cost of Hospice care under your Medicare Hospital Insurance (Part A). When all requirements are met Medicare will cover the following: SERVICES COVERED PROVIDED AS APPROPRIATE DEVELOPED IN THE PLAN OF CARE NON-COVERED SERVICES (Medicare Notice of Non-Coverage) Physician Services Nursing care Medical appliances and supplies Medications for symptom mgt. and pain relief of the terminal illness (must be preapproved by Hospice) Short-term inpatient care for pain and symptom control Spiritual counseling Hospice Aide Bereavement counseling Physical Therapy, Occupational Therapy, Speech Therapy Medical social services Dietary and other counseling Volunteer services Complementary therapies Treatment for the terminal illness that is not within the hospice plan of care Care provided by another hospice that was not arranged by the patient s hospice Transportation that has not been authorized by Keystone Hospice Medications that are not related to the terminal illness Visits to the emergency department without prior approval or arrangements by Keystone Hospice Inpatient care at non- contracted facilities Sitter Services/Hired Caregivers Admission to the hospital without the prior approval or arrangements by Hospice Lab studies, medical testing and/or any treatments not approved by Keystone Hospice CHARGES In most cases, your insurance company will pay Hospice directly; however, not all insurance plans provide full coverage for hospice care and some hospice services may not be covered under your plan. Keystone receives our reimbursement from Medicare, Medicaid and private health insurance for services. All third party payers are billed for hospice services as appropriate. No patient is refused care due to lack of financial means to pay for services. All patients, who meet the requirements, are accepted regardless of ability to pay. Social workers will meet with the patient/family to determine concerns and needs. Should any change be made in this policy regarding services or charges, you or your responsible party will be advised. If you have questions about charges or insurance billings please call the Keystone office.

8 6 PLAN FOR CARE, TREATMENTS & SERVICES Keystone uses an interdisciplinary approach to developing your individual plan of care, which is based upon identified problems, needs and goals, physician orders for medications, treatments and care, your environment and personal wishes whenever possible. Effective pain management is an important part of your treatment plan. The plan includes five basic areas: Physical Care Personal Care and Comfort Spiritual Needs Psychosocial and Social Needs; and Bereavement Care The plan is reviewed and updated as needed, based on your changing needs. Patients and their advocates are encouraged to participate in care planning. Patients have the right to refuse any medication or treatment procedure. However, such refusal may require us to obtain a written statement releasing the agency from all responsibility resulting from such action. Should this happen, Keystone would encourage you to discuss the matter with your physician for advice and guidance. Keystone fully recognizes your right to dignity and individuality, including the privacy in treatment and in the care of your personal needs. A team member will always notify you if an additional individual needs to be present for your visit for reasons of safety, education or supervision. The team member will ask your permission prior to visiting your home. You have the right to refuse any visitors and this will not compromise your care in any way. Keystone does not participate in any experimental research connected with patient care except under the direction of your physician and with your written consent. There must be a willing, able and available caregiver to be responsible for your care between hospice visits. This person can be you, a family member, a friend or a paid caregiver. MEDICAL RECORDS Your medical record is maintained by Keystone s staff to document physician orders, assessments, progress notes and treatments. Your records are kept strictly confidential by our staff and are protected against loss, destruction, tampering or unauthorized use. The Notice of Privacy Practices describes how you re protected. DISCHARGE, TRANSFER & REFERRAL Discharge, transfer or referral from Hospice may result from several types of situations including the following: The hospice determines that the patient is no longer terminally ill; The patient moves out of the hospice s service area; The patient transfers to another hospice; The patient s behavior (or situation) is disruptive, abusive or uncooperative to the extent that delivery of care to the patient or the ability of the hospice to operate effectively is seriously impaired; Issues of patient or staff safety cannot be resolved; and Patient/family requests to end (revoke) the services of the hospice. You will be given a timely advance notice of a transfer to another agency or discharge, except in case of emergency. If you should be transferred or discharged to another organization, Keystone will provide the information pertinent to your continued care, including pain management. If you are discharged because you are no longer considered to be terminally ill, Keystone will provide any necessary family counseling, patient education or other services as indicated. If you find yourself again needing our services, Keystone can admit you right away with a physician order. All transfers or discharges will be documented in the medical chart on a discharge summary. When a discharge occurs, an assessment will be done and instructions provided for any needed ongoing care or treatment. Keystone will coordinate your referral to available community resources as needed. If you decide to move (still within our service area), our services can follow you and will continue as normal.

9 7 PATIENT SATISFACTION Keystone s goal is 100% patient and family satisfaction. Please ask questions if something is unclear regarding hospice services, the care you receive, or fail to receive, or if Keystone can help in any other way. At intervals, the agency sends out a Patient Satisfaction Survey. Your answers help Keystone to improve services and ensure that your needs and expectations are met. When you receive one, please complete the survey and return it as soon as possible. Please do not hesitate to call anytime with suggestions on how Keystone can better meet your needs. PROBLEM SOLVING PROCEDURE In accordance with the goal of 100% patient and family satisfaction, Keystone has developed a procedure with which to quickly resolve complaints. If you feel that Keystone s staff has failed to follow our policies or has in any way denied you your rights, please follow these steps without fear of discrimination or reprisal: 1. Notify the hospice director, Lenny Jensen, at the phone number listed on of the back of this booklet, You may also contact us in writing at: 1159 E Iron Eagle Dr., Ste 170-H, Eagle, ID Most problems can be solved at this level as Keystone is committed to meeting your needs. 2. You may also contact your state s home health hotline which receives complaints or questions about local home health agencies and complaints regarding the implementation of advance directive requirements. 3. You may also lodge complaints with the Consumer Protective Division of the Attorney General s office, the Commissioner of the State Department of Public Health or with any other agency. Abuse and Neglect are against the law. You are encouraged to report suspected abuse, neglect or exploitation of adults and children to Idaho Commission on Aging or

10 8 THE ROLES OF THE HOSPICE STAFF CASE MANAGING NURSE You will be assigned a case managing nurse who will make intermittent visits to your place of residence. The role of the nurse is to help prevent and relieve pain and other symptoms, and to teach caregivers ways to provide for your care. The nurse will also make certain that necessary medical supplies and equipment are ordered, and will assist in monitoring medications. Regular communication with your physician will make certain that he/she is aware of your status and that orders are being followed. SOCIAL WORKER A medical social worker is a member of the team who is supportive in many ways for you and your family. They are able to recommend things like Meals on Wheels, and good financial and legal resources. Facing a serious illness can be a time of tremendous pain and confusion for you and your family and our social workers have expertise in family counseling and will provide support. Services that may be provided by the social worker include: Emotional support, counseling and guidance to the patient and family in coping with stress related to the illness. Identification of community resources that are available to help you. Assistance with planning for funeral arrangements, nursing home placement, etc. Information about Advanced Directives. CHAPLAIN Keystone chaplains are integral team members as we recognize spiritual pain as an important aspect to terminal illness. The hospice chaplains are available to assist patients and families coping with significant spiritual issues that often arise due to terminal illness. Chaplain services include regular pastoral care visits, on-call availability for crises, conducting funerals and memorial services as requested, and contacting a patient s own minister for additional support if desired. Hospice chaplains do not impose their personal belief systems or seek to change the beliefs of others and are an optional aspect to hospice care. HOSPICE AIDE Hospice aides provide basic bedside care on a part-time basis. Keystone aides have specialized experience in caring for people and have been carefully chosen to provide care for hospice patients. The Hospice aide assists with activities of daily living such as bathing, nail cutting, hair care, shaving, skin care, linen changes, catheter care, and straightening the patient s immediate surroundings. Hospice aides do not dispense medication. They will report any changes in the condition of the patient, to the appropriate team member.

11 9 VOLUNTEERS A vital part of hospice is the carefully selected and well-trained volunteers who work alongside the professional staff. These special people provide many different types of support for patients and those coping with terminal illness, grief and loss. They are good listeners, non judgmental, adaptable and have a strong desire to reach out with love and concern to others. Volunteers may be used on a regular schedule or on a call when needed basis and are not medically trained. BEREAVEMENT Bereavement services are an integral part of our hospice program. Bereavement counselors help patients and families in two different ways: Anticipatory grieving, and bereavement. When a patient and family receive a terminal diagnosis, they often struggle with grief regarding an impending illness and death. Medical social workers and chaplains are available to assist families during these emotionally difficult times to help prepare the family for the impending loss. While one individual is identified as the primary contact with the family, generally the spouse or primary caregiver, all members of the family are eligible to receive bereavement services. The bereavement services for families and caregivers are available for a period of at least 13 months following the patient s death. They include regular mailings to provide support and education regarding grief, community referrals for grief support groups, phone contacts and individual visits (as desired by the bereaved family) by the Keystone team to assess bereavement coping skills and provide emotional support.

12 10 YOUR RIGHTS & RESPONSIBILITIES AS A HEALTH CARE PATIENT As a Home Care provider, Keystone Hospice has an obligation to protect the rights of our patients and explain these rights to you in a way you can understand before treatment begins and on an ongoing basis, as needed. Your family or your guardian may exercise those rights for you in the event that you are not competent or able to exercise them for yourself. YOU HAVE THE RIGHT TO: 1. To be fully informed of these rights and all rules governing patient conduct. The patient has the right to considerate and respectful care, full recognition of personal dignity and individuality, privacy in treatment and in care of personal needs. The patient has the right to know by name the home care staff responsible for his care and request proper identification. 2. To have a relationship with Keystone s staff that is based on honesty and ethical standards of conduct. To have ethical issues addressed, and to be informed of any financial benefit Keystone receives if you are referred to another organization, service, individual or other reciprocal relationship. Keystone s staff is prohibited from accepting gifts or borrowing from you. 3. To have cultural, psychosocial, spiritual and personal values, beliefs and preferences respected. You will not be discriminated against based on social status, political belief, sexual preference, race, color, religion, national origin, age, sex or handicap. 4. To be fully informed of your health condition, unless medically contraindicated and documented in the clinical record. The patient has the right to be fully informed and involved in the treatment plan established by the home care staff. 5. To accept or refuse care, treatment and services without fear of reprisal or discrimination. You may refuse part or all of care/services to the extent permitted by law. However, should you refuse to comply with the plan of care and your refusal threatens to compromise Keystone s commitment to quality care, then the agency or your physician may be forced to discharge you from services and refer you to another source of care. 6. To receive appropriate initial and ongoing assessment and management of pain; education about you and your family s role in managing pain when appropriate, as well as potential limitations and side effects of pain treatments. Your personal, cultural, spiritual and/or ethnic beliefs will be taken into account when addressing pain management. 7. To confidentiality of written, verbal and electronic information including your medical records, information about your health, social and financial circumstances or about what takes place in your home, and to approve or to refuse release of any information to any individual outside the agency, except in the case of transfer to another agency or health facility, or as required by law or third-party payment contract. 8. To expect that the home care staff within its available resources will make a reasonable response to the request by a patient for services, and provide reasonable continuity of care. 9. To have family involved in decision making as appropriate, concerning your care, treatment and services, when approved by you or your surrogate decision maker and when allowed by law. 10. To be assured that you, the family, or significant other(s) will be taught about required services, so that the patient can develop or regain self-care skills and the family or others can understand and help the patient. The patient is informed about the nature and purpose of any technical procedure that will be performed as well as who will perform the procedure. 11. The patient s family or guardian may exercise the patient s rights when the patient has been judged incompetent. 12. To be cared for by personnel who are competent through education and experience.

13 To file a complaint regarding quality of care with the agency without fear of recrimination. Agency employees must respect the patient s personal property. The patient has the right to file a complaint when personal property has not been treated with respect. 14. To be free from mental, physical, sexual and verbal abuse, neglect and exploitation. 15. To be informed about the care that is to be furnished, name(s) and responsibilities of staff members who are providing and responsible for your care, treatment or services, planned frequency of services, expected and unexpected outcomes, potential risks or problems and barriers to treatment prior to the start of care. The patient has the right to be informed of any changes in the treatment plan and goals. The patient has the right to receive this information orally (or in writing, when requested). 16. To make informed decisions regarding care or services. The patient is involved in resolving conflicts about care or service decisions. 17. To formulate advance directives and to receive written information about the Agency s policies on advance directives, including a description of applicable state law. The patient is involved in decisions to withhold resuscitation. The patient is involved in decisions to forgo or withdraw lifesustaining care. You will be informed if Keystone cannot implement an advance directive on the basis of conscience. 18. To address your wishes concerning end of life decisions and to have health care providers comply with your advance directives in accordance with state laws. 19. To choose your health care providers and communicate with those providers. 20. To choose whether or not to participate in research, investigational or experimental studies or clinical trials. 21. To have communication needs met and to receive communication in a manner the patient can be reasonably expected to understand. 22. To be informed verbally and in writing at the time of admission, the approximate maximum dollar amount, if any, of care or services to be borne by the patient. To be informed of the organization s charges and policies concerning payment of services, including, to the extent possible, insurance coverage and other methods of payment. The patient has the right to examine and receive an explanation of his home care bill for services rendered, and to be informed of all changes in charges within 30 calendar days of the date the home care provider becomes aware of any changes. 23. When Keystone Hospice cannot meet the patient s needs the patient has a right to prompt and orderly transfer to another organization or level of care or service. When a patient is referred to another organization, the patient is involved in the decision and is informed of any known financial benefit to the referring organization. 24. Keystone Hospice will inform and distribute written information to the patient, in advance, concerning its policies on advance directives, including a description of applicable State law. 25. To refuse filming or recording or revoke consent for filming or recording of care, treatment and services for purposes other than identification, diagnosis or treatment. 26. To receive pastoral and other spiritual services. 27. To have an environment that preserves dignity and contributes to a positive self-image. 28. The patient and their family have a right to lodge complaints with, or recommend changes to the Agency about the care that is being provided. The patient has a right to have complaints heard, reviewed, and if possible, resolved. The patient can contact the Agency at any time by calling the phone number listed on the back cover of the booklet.

14 12 YOUR RESPONSIBILITY 1. Provide complete and accurate information to the best of your knowledge about your present complaints and past illness(es), hospitalizations, pain, medications, allergies, and other matters relating to your health. Notify Keystone of unexpected changes in your condition (e.g., hospitalization, changes in the plan of care, symptoms to be reported, pain, homebound status or change of physician). 2. Follow the plan of care and instructions and accept responsibility for the outcomes if you do not follow the care, treatment or service plan. 3. Ask questions about your care, treatment and service or other instruction when you do not understand what you are expected to do. If you have concerns about your care or cannot comply with the plan, let the Keystone team know. 4. Discuss pain, pain relief options and your questions, worries and concerns about pain medication with staff or appropriate medical personnel. 5. Notify Keystone of schedule changes if your visit schedule needs to be changed due to medical appointment, family emergencies, etc. 6. Notify Keystone of insurance changes if your Medicare or other insurance coverage changes or if you decide to enroll in a Medicare or private HMO (health maintenance organization). 7. Promptly meet your financial obligations and responsibilities agreed upon with Keystone Hospice. 8. Please adhere to our rules and regulations. 9. Inform Keystone of changes in advance directives and any changes you may have decided upon. 10. Advise Keystone of problems or dissatisfaction with services provided. 11. Provide a safe environment for care to be provided (such as keeping pets confined during our visits.) 12. Show respect and consideration for agency staff and equipment. 13. Carry out mutually agreed responsibilities.

15 13 SECTION II. NOTICE OF PRIVACY PRACTICES FOR PROTECTED HEALTH INFORMATION THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION. PLEASE REVIEW IT CAREFULLY Keystone Hospice is required by law to maintain the privacy of protected health information and to provide you adequate notice of your rights and our legal duties and privacy practices with respect to the uses and disclosures of protected health information. [45 CFR ] Keystone will use or disclose protected health information in a manner that is consistent with this notice. The agency maintains a record (paper/electronic file) of the information we receive and collect about you and of the care we provide to you. This record includes physician s orders, assessments, medication lists, clinical progress notes and billing information. As required by law, the agency maintains policies and procedures about our work practices, including how we provide and coordinate care provided to our patients. These policies and procedures include how we create, maintain and protect medical records; access to medical records and information about our patients; how we maintain the confidentiality of all information related to our patients; security of the building and electronic files; and how we educated staff on privacy of patient information. As our patient, information about you must be used and disclosed to other parties for purposes of treatment, payment and health care operations. Examples of information that must be disclosed: Treatment: Providing, coordinating or managing health care and related services, consultation between health care providers relating to a patient or referral of a patient for health care from one provider to another. For example, we meet on a regular basis to discuss how to coordinate care to patients and schedule visits. Payment: Billing and collecting for services provided, determining plan eligibility and coverage, utilization review (UT), precertification, medical necessity review. For example, occasionally the insurance company requests a copy of the medical record be sent to them for review prior to paying the bill. Health Care Operations: General agency administration and business functions, quality assurance/improvement activities; medical review; auditing functions; developing clinical guidelines; determining the competence or qualifications of health care professionals; evaluating agency performance; conducting training programs with students or new employees; licensing, survey, certification, accreditation and credentialing activities; internal auditing and certain fundraising and marketing activities. For example, our agency periodically holds clinical record review meetings where the consulting professional of our record review committee will audit clinical records for meeting professional standards and utilization review. The following uses and disclosures do not require your consent, and include, but are not limited to, a release of information contained in financial records and/or medical records, including information concerning communicable diseases such as Human Immune Deficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), drug/alcohol abuse, psychiatric diagnosis and treatment records and/or laboratory test results, medical history, treatment progress and/or any other related information to: 1. Your insurance company, self-funded or thirdparty health plan, Medicare, Medicaid or any other person or entity that may be responsible for paying or processing for payment any portion of your bill for services; 2. Any person or entity affiliated with or representing us for purposes of administration, billing and quality and risk management; 3. Any hospital, nursing home or other health care facility to which you may be admitted; 4. Any assisted living or personal care facility of which you are a resident; 5. Any physician providing you care;

16 14 6. Licensing and accrediting bodies, including the information contained in the OASIS Data Set to the state agency acting as a representative of the Medicare/Medicaid program; 7. Contact you to provide appointment reminders or information about other health activities we provide; 8. Contact you to raise funds for Keystone s not-forprofit organization, Keystone Helping Hands (see inside back cover for more information); and 9. Other health care providers to initiate treatment. Keystone is permitted to use or disclose information about you without consent or authorization in the following circumstances: 1. In emergency treatment situations, if we attempt to obtain consent as soon as practicable after treatment; 2. Where substantial barriers to communicating with you exist and we determine that the consent is clearly inferred from the circumstances; 3. Where we are required by law to provide treatment and we are unable to obtain consent; 4. Where the use or disclosure of medical information about you is required by federal, state or local law; 5. To provide information to state or federal pubic health authorities, as required by law to: prevent or control disease, injury or disability; report births and deaths; report child abuse or neglect; report reactions to medications or problems with products; notify persons of recalls of products they may be using; notify a person who may have been exposed to a disease or may be at risk for contracting or spreading a disease or condition; and notify the appropriate government authority if we believe a patient has been the victim of abuse, neglect or domestic violence (if you agree or when required or authorized by law); 6. Health care oversight activities such as audits, investigations, inspections and licensure by a government health oversight agency as authorized by law to monitor the health care system, government programs and compliance with civil rights laws; 7. Certain judicial administrative proceedings if you are involved in a lawsuit or a dispute. We may disclose medical information about you in response to a court or administrative order, a subpoena, discovery request or other lawful process by someone else involved in the dispute, but only if efforts have been made to tell you about the request or to obtain an order protecting the information requested; 8. Certain law enforcement purposes such as helping to identify or locate a suspect, fugitive, material witness or missing person, or to comply with a court order or subpoena and other law enforcement purposes; 9. To coroners, medical examiners and funeral directors, in certain circumstances, for example, to identify a deceased person, determine the cause of death or to assist in carrying out their duties; 10. For cadaveric organ, eye or tissue donation purposes to communicate to organizations involved in procuring, banking or transplanting organs and tissues (if you are an organ donor); 11. For certain research purposes under very select circumstances. We may use your health information for research. Before we disclose any of your health information for such research purposes, the project will be subject to an extensive approval process. We will usually request your written authorization before granting access to your individually identifiable health information; 12. To avert a serious threat to health and safety: To prevent or lessen a serious and imminent threat to the health or safety of a particular person or the general public, such as when a person admits to participation in a violent crime or serious harm to a victim or is an escaped convict. Any disclosure, however, would only be to someone able to prevent the threat;

17 For specialized government functions, including military and veterans activities, national security and intelligence activities, protective services for the President and others, medical suitability determinations, correctional institution and custodial situations; and 14. For Workers Compensation purposes: Workers Compensation or similar programs provide benefits for work related injuries or illness. Keystone is permitted to use or disclose information about you without consent or authorization provided you are informed in advance and given the opportunity to agree to or prohibit or restrict the disclosure in the following circumstances: To a family member, relative, friend or other identified person, the information relevant to such person s involvement in your care or payment for care; to notify family member, relative, friend, or other identified person of the individual s location, general condition or death. Other uses and disclosures will be made only with your written authorization. That authorization may be revoked, in writing at any time, except in limited situations. Keystone Palliative Care and Hospice will obtain a valid authorization from patients prior to using or disclosing any Protected Health Information for its marketing purposes. YOUR RIGHTS YOU HAVE THE RIGHT, SUBJECT TO CERTAIN CONDITIONS, TO: Request restrictions on uses and disclosures of your protected health information for treatment, payment or health care operations. However, we are not required to agree to any requested restriction. Restrictions to which we agree will be documented. Agreements for further restrictions may, however, be terminated under applicable circumstances (e.g., emergency treatment). Confidential communication of protected health information. We will arrange for you to receive protected health information by reasonable alternative means or at alternative locations. Your request must be in writing. We do not require an explanation for the request as a condition of providing communications on a confidential basis and will attempt to honor reasonable requests for confidential communications. Inspect and obtain copies of protected health information which is maintained in a designated record set, except for psychotherapy notes, information compiled in reasonable anticipation of, or for use in, a civil, criminal or administrative action or proceeding, or protected health information that is subject to the Clinical Laboratory Improvements Amendments of 1988 [42 USC 263a and 45 CFR 493 (a)(2)]. If you request a copy of your health information, we will charge a reasonable fee for copying of 25 per page copied. If we deny access to protected health information, you will receive a timely, written denial in plain language that explains the basis for the denial, your review rights and an explanation of how to exercise those rights. If we do not maintain the medical report, we will tell you where to request the protected health information. Request to amend protected health information for as long as the protected health information is maintained in the designated record set. A request to amend your record must be in writing and must include a reason to support the requested amendment. We will act on your request within sixty (60) days of receipt of the request. We may extend the time for such action by up to 30 days, if we provide you with a written explanation of the reasons for the delay and the date by which we will complete action on the request. We may deny the request for amendment if the information contained in the record was not created by us, unless the originator of the information is no longer available to act on the requested amendment; is not a part of the designated medical record set; would not be available for inspection under applicable laws and regulations; and the record is accurate and complete. If we deny your request for amendment, you will receive a timely, written denial in plain language that explains the basis for the denial, your rights to submit a statement disagreeing with the denial and an explanation of how to submit that statement.

18 16 Receive an account of disclosures of protected health information made by our Agency for up to six (6) years prior to the date on which the accounting is requested for any reason other than for treatment, payment or health operations and other applicable exceptions. The written account includes the date of each disclosure, the name/address (if known) of the entity or person who received the protected health information, a brief description of the information disclosed and a brief statement of the purpose of the disclosure or a copy of your written authorization or a written request for disclosure. We will provide the accountings within 60 days of receipt of a written request. However, we may extend the time period for providing the accounting by 30 days if we provide you with a written statement of the reasons for the delay and the date by which you will receive the information. We will provide the first accounting you request during any 12-month period without charge. Subsequent accounting requests may be subject to a reasonable costbased fee. Obtain a paper copy of this notice, even if you had agreed to receive this notice electronically from us upon request. COMPLAINTS If you believe that your privacy rights have been violated, you may complain to Keystone Hospice or to the Secretary of the U.S. Department of Health and Human Services. There will be no retaliation against you for filing a complaint. The complaint should be filed in writing, and should state the specific incident(s) in terms of subject, date and other relevant matters. A complaint to the Secretary must be filed in writing within 180 days of when the act or omission complained of occurred, and must describe the acts or omissions believed to be in violation of applicable requirements. [45 CFR ] EFFECTIVE DATE This notice is effective January 1, We are required to abide by the terms of the notice currently in effect, but we reserve the right to change these terms as necessary for all protected health information that we maintain. If we change the terms of this notice (while you are receiving service), we will promptly revise and distribute a revised notice to you as soon as practicable by mail, (if you have agreed to electronic notice) or hand delivery. If you require further information about matters covered by this notice, please contact: Lenny Jensen at You may also contact the State of Idaho Department of Health and Welfare at

19 17 SECTION III. ADVANCE DIRECTIVES The following information explains your right to make healthcare decisions and how you can plan now for your medical care if you are unable to speak for yourself in the future. A federal law requires us to give you this information. We hope this information will help increase your control over your medical treatment. WHO DECIDES ABOUT MY TREATMENT? Your doctors will give you information and advice about treatment. You have the right to choose. You can say Yes to treatments you want. You can say No to any treatment that you don t want even if the treatment might keep you alive longer. HOW DO I KNOW WHAT I WANT? Your doctor must tell you about your medical condition and about what different treatments and pain management alternatives can do for you. Many treatments have side effects. Your doctor must offer you information about problems that medical treatment is likely to cause you. Often, more than one treatment might help you and people may have different ideas about which is best. Your doctor can tell you which treatments are available to you, but your doctor can t choose for you. That choice is yours to make and depends on what is important to you. CAN OTHER PEOPLE HELP WITH MY DECI- SION? Yes. Patients often turn to their relatives and close friends for help in making medical decisions. These people can help you think about the choices you face. You can ask the doctors and nurses to talk with your relatives and friends. They can ask the doctors and nurses questions for you. CAN I CHOOSE A RELATIVE OR FRIEND TO MAKE HEALTH CARE DECISIONS FOR ME? Yes. You may tell your doctor that you want someone else to make health care decisions for you. Ask the doctor to list that person as your health care surrogate in your medical record. The surrogate s control over your medical decisions is effective only during treatment for your current illness or injury or, if you are in a medical facility, until you leave the facility. WHAT IF I BECOME TOO SICK TO MAKE MY OWN HEALTH CARE DECISIONS? If you haven t named a surrogate, your doctor will ask your closest available relative or friend to help decide what is best for you. Most of the time that works. But sometimes not everyone agrees about what to do. That s why it is helpful if you can say in advance what you want to happen if you can t speak for yourself. DO I HAVE TO WAIT UNTIL I AM SICK TO EX- PRESS MY WISHES ABOUT HEALTH CARE? No. In fact, it is better to choose before you get very sick or have to go into a hospital, nursing home, or other health care facility. You can use an Advanced Health Care Directive to say who you want to speak for you and what kind of treatments you want. These documents are called advance because you prepare one before health care decisions need to be made. They are called directives because they state who will speak on your behalf and what should be done. In Idaho, the part of an advance directive you can use to appoint an agent to make health care decisions is called a Power of Attorney for Health Care. The part where you can express what you want done is called an Individual Health Care Instruction. WHO CAN MAKE AN ADVANCE DIRECTIVE? You can if you are 18 years or older and are capable of making your own medical decisions. You do not need a lawyer. WHO CAN I NAME AS MY AGENT? You can choose an adult relative or any other person you trust to speak for you when medical decisions must be made. WHEN DOES MY AGENT BEGIN MAKING MY MEDICAL DECISIONS? Usually, a health care agent will make decisions only after you lose the ability to make them yourself. But, if you wish, you can state in the Power of Attorney for Health Care that you want the agent to begin making decisions immediately. HOW DOES MY AGENT KNOW WHAT I WOULD WANT? After you choose your agent, talk to that person about what you want. Sometimes treatment decisions are hard to make, and it truly helps if your agent knows what you want. You can also write your wishes down in your advance directive.

20 18 WHAT IF I DON T WANT TO NAME AN AGENT? You can still write out your wishes in your advance directive, without naming an agent. You can say that you want to have your life continued as long as possible. Or you can say that you would not want treatment to continue your life. Also, you can express your wishes about the use of pain relief or any other type of medical treatment. Even if you have not filled out a written Individual Health Care Instruction, you can discuss your wishes with your doctor, and ask your doctor to list those wishes in your medical record. Or you can discuss your wishes with your family members or friends. But it will probably be easier to follow your wishes if you write them down. WHAT IF I CHANGE MY MIND? You can change or cancel your advance directive at any time as long as you can communicate your wishes. To change the person you want to make your health care decisions, you must sign a statement or tell the doctor in charge of your care. WHAT HAPPENS WHEN SOMEONE ELSE MAKES DECISIONS ABOUT MY TREATMENT? The same rules apply to anyone who makes health care decisions on your behalf a health care agent, a surrogate whose name you gave to your doctor, or a person appointed by a court to make decisions for you. All are required to follow your Health Care Instructions or, if none, your general wishes about treatment including stopping treatment. If your treatment wishes are not known, the surrogate must try to determine what is in your best interest. The people providing your health care must follow the decisions of your agent or surrogate unless a requested treatment would be bad medical practice or ineffective in helping you. If this causes disagreement that cannot be worked out, the provider must make a reasonable effort to find another health care provider to take over your treatment. WILL I STILL BE TREATED IF I DON T MAKE AN ADVANCE DIRECTIVE? Absolutely. You will still get medical treatment. We want you to know that if you become too sick to make decisions, someone else will have to make them for you. Remember that: A Power of Attorney for Health Care lets you name an agent to make decisions for you. Your agent can make most medical decision not just those about life sustaining treatment when you can t speak for yourself. You can also let your agent make decisions earlier, if you wish. You can create an Individual Health care Instruction by writing down your wishes about health care or by talking with your doctor and asking the doctor to record your wishes in your medical file. If you know when you would or would not want certain types of treatment, an Instruction provides a good way to make your wishes clear to your doctor and to anyone else who may be involved in deciding about treatment on your behalf. These two types of Advance Health care Directives may be used together or separately. HOW CAN I GET MORE INFORMATION ABOUT MAKING AN ADVANCE DIRECTIVE? Ask your doctor, nurse, social worker, or health care provider to get more information for you. You can have a lawyer write an advance directive for you, or you can complete an advance directive by filling in the blanks on a form. A nursing facility resident may file a complaint with the Licensing and Certification Office concerning non-compliance with the advance directives or for resident abuse, neglect, or misappropriation of resident property in the facility (42 CFR (b) (7) (iv)).

21 19 SECTION IV. BASIC HOME SAFETY AND INFECTION CONTROL These safety instructions are provided to assist you in identifying safety hazards in your home. You are responsible for correcting any hazards identified. Please speak with your nurse or call our office at any time if you have any concerns or questions about patient safety. GENERAL SAFETY Keep in touch with others. If you live alone, ask a neighbor, friend, or family member to check on you each day. Get up slowly. Because of certain changes in blood circulation, it is best to get up from a chair or bed slowly and to turn your head slowly to avoid dizziness. Don t hurry. Many accidents happen because people try to do things too quickly. Take time to be safe. Carrying objects Make sure your view isn t blocked. Get a firm grip. Lift with your legs (knees bent, back straight), and walk slowly. Get help for heavy or awkward objects. Use a solid step stool or ladder, not a chair or box, if you must climb to reach a high place. Check hot water temperatures to prevent burns. Experts suggest setting hot water at 100 degrees F or lower. PREVENTING FALLS At least half of all falls happen at home. Each year, thousands of older Americans experience falls that result in serious injuries, disability and yes, even death. Falls are often due to hazards that are easily overlooked but easy to fix. Keystone staff will work with you to assess your potential safety risks. The following factors may heighten your risk for falls: History of Falling 2 or more falls in the last 6 months. Vision Loss changes in ability to detect and discriminate objects; decline in depth perception; decreased ability to recover from a sudden exposure to bright light or glare. Hearing Loss may not be as quickly aware of a potentially hazardous situation. Foot Pain/Shoe Problems foot pain; decreased sensation/feeling; skin breakdown; illfitting or badly worn footwear. Medications taking four or more medications; single or multiple medications that may cause drowsiness, dizziness or low blood pressure. Balance & Gait Problems decline in balance; decline in speed of walking; weakness of lower extremities. High or Low Blood Pressure that causes unsteadiness. Hazards Inside Your Home tripping and slipping hazards, poor lighting, bathroom safety, spills, stairs, reaching, pets that get under foot. Hazards Outside Your Home uneven walkways, poor lighting, gravel or debris on sidewalks, no handrails, pets that get under foot, hazardous materials (snow, ice, water, oil) that need periodic removal and clean up. Review each of the following safety tips and check the ones you need to work on: Keep emergency numbers in large print near each phone. Put a phone near the floor in case you fall and can t get up. Wear shoes that give good support and have thin non-slip soles. Avoid wearing slippers and athletic shoes with deep treads. Remove things you can trip over (such as papers, books, clothes, and shoes) from stairs and places where you walk. Keep outside walks and steps clear of snow and ice in the winter. Remove small throw rugs or use double-sided tape to keep the rugs from slipping. Ask someone to move any furniture so your path around the house is clear. Clean up spills immediately. Be aware of where your pets are at all times.

22 20 Do not walk over or around cords or wires, i.e., cords from lamps, extension cords, or telephone cords. Coil or tape cords and wires next to the wall so you can t trip over them. Have an electrician add more outlets if needed. Keep items used often within easy reach (about waist high) in cabinets. Use a steady step stool with a hand bar. Never use a chair as a step stool. Improve the lighting in your home. Replace burned out bulbs. Lamp shades or frosted bulbs can reduce glare. Make sure stairways, halls, entrances and outside steps are well lighted. Have a light switch at the top and bottom of the stairs. Place a lamp, flashlight and extra batteries within easy reach of your bed. Place night-lights in bathrooms, halls and passageways so you can see where you are walking at night. Make sure the carpet is firmly attached to every step. If not, remove the carpet and attach non-slip rubber treads on the stairs. Paint a contrasting color on the top front edge of all steps so you can see the stairs better. Fix loose handrails or put in new ones. Make sure handrails are on both sides of the stairs and are as long as the stairs. Fix loose or uneven steps. Install grab bars next to your toilet and in the tub or shower. Use non-slip mats in the bathtub and on shower floors. Use an elevated toilet seat and/or shower stool, if needed. Exercise regularly. Exercise makes you stronger and improves your balance and coordination. Talk to your doctor about what exercise is right for you. Have your nurse, doctor or pharmacist look at all the medicines you take, even over-thecounter medicines. Some medicines can make you sleepy or dizzy. Have your vision checked at least once a year by an eye doctor. Poor vision can increase your risk of falling. Get up slowly after you sit or lie down. Use a cane or assistive device for extra stability, if needed. Think about wearing an alarm device that will bring help in case you fall. FIRE SAFETY/BURN PRECAUTIONS The fire department number is posted on every telephone. All family members and caregivers are familiar with emergency 911 procedures. Notify the fire department if a disabled person is in the home. Do not smoke in bed. Never leave burning cigarettes unattended. Do not empty smoldering ashes in a trash can. Keep ashtrays away from upholstered furniture and curtains. Do not smoke where oxygen equipment is being used. Install smoke alarms on every floor of your home, including the basement. Place smoke alarms near rooms where people sleep. Test smoke alarms every month to make sure they are working properly. Install new smoke alarm batteries when you change your clocks for daylight savings time in the spring and fall. Fire extinguishers are checked frequently for stability. Make a family fire escape plan and practice it every six months. At least two different escape routes are planned from each room for each family member. If your exit is through a ground floor window, make sure it opens easily. If you live in an apartment building, know where the exit stairs are located. Do not use an elevator during a fire emergency. Designate a safe place in front of the house or apartment building for family members to meet after escaping a fire. If your fire escape is cut off, remain calm, close the door and seal cracks to hold back smoke. Signal for help at the window. A bed bound patient can be evacuated to a safe area by placing him/her on a sturdy blanket and pulling/dragging them out of the home.

23 21 Remember, life safety is first, but if the fire is contained and small, you may be able to use your fire extinguisher until the fire department arrives. Have your heating system checked and cleaned regularly by someone qualified to do maintenance. Wood burning stoves are properly installed, chimney is inspected and cleaned by a professional chimney sweep and trash is not burned in stove because this could overheat the stove. Gasoline or other flammable liquids should never be used to start wood stove fires. Portable heaters (electric or kerosene) are placed out of the path of traffic areas. The heater is operated at least three feet away from upholstered furniture, drapes, bedding and other combustible materials. The heater is used on the floor and is turned off when family members leave the house or are sleeping. A kerosene heater is only used in a well ventilated room. Kerosene is stored outdoors in a tightly sealed, labeled container. Make sure electrical appliances and cords are clean, in good condition and not exposed to liquids. Electrical outlets are grounded. Octopus outlets with several plugs are not used. Keep cooking areas free of flammable objects, (pot holders, towel, etc.). Keep storage areas free of flammable/ combustible items Wear short or tight fitting sleeves while cooking; don t reach over stove burner. Do not leave the stove unattended when cooking, especially when the burner is turned to a high setting. Turn pan handles away from burners and the edge of the stove. Avoid cooking on high heat with oils and fat. Puncture plastic wrap before heating foods in the microwave. Never place hot liquids/solids at edge of counter. Place layered protection between skin and heating pad. Keep electrical appliances away from the bathtub or shower area. Never leave patient alone in the shower/tub. Set water heater thermostat below 120 F to prevent accidental scalding. Store flammable liquids in properly labeled, tightly closed, non-glass containers. Store away from heaters, furnaces, water heaters, ranges, and other gas appliances. Make sure the garage is adequately ventilated. MEDICATION COMPLIANCE: WHAT EVERY PATIENT SHOULD KNOW Proper Medication use: If you take medicine the wrong way, it may prevent you from proper pain or symptom management. It might even cause your illness or condition to get worse. Taking your medicines correctly will give you the best results. Here are some tips: Fill your prescription on time. Refill your prescriptions when you still need to take the medication. Talk to your doctor before stopping a medicine. Take the right dose of medicine, at the right times as prescribed by your doctor. Finish all of your medicine if advised by your doctor. Avoid skipping one or more doses of your medicine. Know what to do if you miss a dose. Take your own medicine. Know name, reason, route, interactions, and side effects of medicine. Use chart or reminder system (pill box or egg carton) to help remember. Read label with light on. Keep medicines away from confused adults or children. Drug names can look alike or sound alike. To avoid errors, check with your health care provider if you have questions.

24 22 Compliance Tips: Educate Before You Medicate. The first and most important step is to educate yourself about the specific drugs you use, the condition they are intended to treat, and the expected effects. Don t be afraid to bother your doctor or pharmacist with your concerns or questions. If a medicine is hard to take, or causes unpleasant side effects, let your doctor know right away. There may be another way to treat your condition or symptom. Ask your doctor or pharmacist if a different medicine, different dosage, or different form (liquid vs. pill, for example) would work. You may qualify for financial assistance to pay for your prescriptions. A recent survey revealed that many adults do not fill their prescriptions or cut back on recommended doses because of cost. You may qualify for financial assistance for prescription drugs. See list of financial assistance programs if you have no prescription drug coverage. Keep a list of your medications with you. See the medication record that is included. HAZARDOUS ITEMS AND POISONS Know how to contact your poison control team. Use care in storing hazardous items. Only store hazardous items in their original containers. Do not mix products that contain chlorine or bleach with other chemicals. Understand the risk of insecticides. They are only bought for immediate need and excess is stored or disposed of properly. Keep hazardous items, cleaners and chemicals out of reach of children and confused or impaired adults. Dispose of household trash in a covered waste receptacle outside the home. POWER OUTAGE In case of a power outage, if you require assistance and your agency phone lines are down, do the following: If you are in a crisis or have an emergency situation, call 911 or go to the nearest hospital emergency room. If it is not an emergency, call your closest relative or neighbor. Our agency will get in touch with you as soon possible. FLOODS Floods are the most common and widespread of all natural hazards. Some floods can develop over a period of days, but flash floods can result in raging water in just a few minutes. Be aware of flood hazards, especially if you live in a low-lying area, near water or downstream from a dam. Assemble a disaster supplies kit. Include a batteryoperated radio, flashlights and extra batteries, first aid supplies, sleeping supplies and clothing. Keep a stock of food and extra drinking water. If local authorities issue a flood watch, prepare to evacuate: Secure your home. Move essential items to the upper floors of your house. If instructed, turn off utilities at the main switches or valves. Do not touch electrical equipment if you are wet or standing in water. Fill the bathtub with water in case water becomes contaminated or services are cut off. Clean the bathtub first. Six inches of moving water can knock you off your feet. If you must walk in a flooded area, do not walk through moving water. Use a stick to check the firmness of the ground in front of you. Our agency will reach you as soon as possible LIGHTNING Inside a home, avoid bathtubs, water faucets and sinks because metal pipes can conduct electricity. Stay away from windows. Avoid using the telephone, except for emergencies. If outside, do not stand underneath a natural lightning rod, such as a tall, isolated tree in an open area. Get away from anything metal, including tractors, farm equipment, bicycles, etc. WINTER STORMS Heavy snowfall and extreme cold can immobilize an entire region. Even areas which normally experience mild winters can be hit with a major snow storm or extreme cold. The results can range from isolation due to blocked roads and downed power lines to the havoc of cars and trucks sliding on icy highways. Gather emergency supplies: Battery powered radio, flashlights, batterypowered lamps, extra batteries.

25 23 Food that doesn t require cooking and a manual can opener. Your medications. Extra blankets. Extra water in clean soda bottles or milk containers. Rock salt to melt ice on walkways and sand to improve traction. Make sure you have enough heating fuel; regular fuel sources may be cut off. Dress for the season: Wear several layers of loose-fitting, light-weight, warm clothing rather than one layer of heavy clothing. The outer garments should be tightly woven and water repellent. Mittens are warmer than gloves. Wear a hat: most body heat is lost through the top of the head. FIRE PREVENTION AND RESPONSE Smoke detectors are recommended in each bedroom, hallway, and in the kitchen. Check them regularly. Mount or store a Fire Extinguisher (ABC type) in a central and accessible area. Make sure it functions well and that you know how to use it. DO NOT SMOKE IN BED or while sleepy. Keep space heaters/portable heaters away from furniture, cords, curtains, or other items that could ignite. Keep space heaters/portable heaters away from walkways where they can be bumped and cause burns. Make sure you have a screen in front of your fireplace. Fire response make sure you and all caring for you know how to use 911 for emergencies. Notify the Fire Department of any disabled persons at your residence. HAVE AN EVACUATION PLAN Establish specific exit routes for safe evacuation and make sure they are free of clutter. 2. Plan how to get someone who is ill out of an apartment that is not on the first floor. 3. Know the location of all doors and windows. EARTHQUAKE/DISASTER PREPAREDNESS Before: 1. Keep a 1 2 week supply of food/water on hand and consider any special dietary needs or formulas you may use. Place in a waterproof container. 2. Store a 1-2 week supply of medications and/ or medical supplies that you will need (insulin, syringes, dressings). 3. Know the procedure to follow if you are using medical equipment that runs on electricity and there is a power failure (ventilators, IV pumps, feeding pumps). 4. Keep a flashlight and portable radio handy. These are helpful if the lights go out or for an emergency. 5. Check the condition and charge on batteries, especially for special medical equipment. 6. Block or lock wheels of items such as hospital beds, commodes, and refrigerators. 7. Persons who live alone should appoint an official buddy who will check on them after an earthquake or disaster. 8. Anchor tall furniture to the wall and remove heavy items from the top shelves. During: 1. If inside, stay inside and take cover under a heavy desk or table away from the windows or objects which may fall. 2. Drag a bed bound patient (or transfer them to a wheelchair) to move to a safe area. 3. Lock the wheels on a wheelchair after moving to a safe area. 4. If outside, stand away from trees, electrical lines, and buildings. 5. Follow your evacuation plan.

26 24 After: 1. Home infusion patients should go to the nearest emergency room if you run out of medications, solutions, or supplies and are unable to contact the Agency. We will try to contact patients as soon as possible after an earthquake. 2. Turn off gas at the meter if you smell gas or hear hissing near gas appliances. DO NOT LIGHT ANY MATCHES IF A GAS LEAK IS SUSPECTED. 3. Assess for injuries and be prepared to administer First Aid. 4. Turn on a portable radio to listen for instructions from Public Safety Agencies. 5. Our agency will contact you as soon as possible INFECTION CONTROL AT HOME Cleanliness and good hygiene help prevent infection. Contaminated materials such as bandages, dressings or surgical gloves can spread infection, and harm the environment. If not disposed of properly, these items can injure trash handlers, family members and others who could come in contact with them. Certain illnesses and treatments (i.e., chemotherapy, dialysis, AIDS, diabetes, burns) can make people more susceptible to infection. Your nurse will instruct you on the use of protective clothing (gowns/gloves) if they are necessary. Notify your physician and/or hospice staff if you develop any of the following signs and symptoms of infection: pain/tenderness/redness or swelling of body part Inflamed skin/rash/sores/ulcers painful urination confusion nausea/vomiting/diarrhea fever or chills sore throat/cough increased tiredness/weakness pus (green/yellow drainage) You can help control infection by following these guidelines: RESPIRATORY HYGIENE When Coughing or sneezing turn your head from others. Use tissue to cover your nose and mouth and dispose in a waste bin. If no tissue available sneeze or cough into your elbow. Decontaminate your hands after discarding tissue using soap and water or alcohol gel for at least 15 seconds. If a mask is required for droplet precautions due to serious illness, hospice will provide this equipment for you. HAND WASHING Wash your hands before and after giving any care to the patient (even if wearing gloves), before handling or eating foods, and after using the toilet, changing a diaper, handling soiled linens, touching pets, coughing, sneezing or blowing nose. Hand washing needs to be done frequently and correctly. Soap and Water Procedure: When hands are visibly dirty or contaminated or soiled with blood or other body fluids, use soap and running water for washing your hands. Remove jewelry; use warm running water and soap (liquid soap is best); hold your hands down so water flows away from your arms; scrub for at least seconds (30 seconds recommended); make sure you clean under your nails and between your fingers; dry your hands with a clean paper towel; and use a new paper towel to turn off the faucet. Apply hand lotion after washing to help prevent and soothe dry skin. Waterless Antiseptic Hand Cleanser Procedure: If hands are not visibly dirty or contaminated or soiled with blood or other body fluids, an alcohol-based hand rub may be used for routinely decontaminating hands. The antiseptic agent should contain 60% ethyl alcohol or 70% isopropyl alcohol. When using a waterless antiseptic hand cleaner, make sure the cap or spout is open. Place a quantity of liquid or gel (about the size of a dime

27 25 or use the amount recommended by the product manufacturer) in the palm of one hand; rub hands vigorously, along sides and between fingers, using a circular motion on each finger for seconds until cleaner evaporates completely. Washing your hands is the single most important step in controlling the spread of infection. DISPOSABLE ITEMS & EQUIPMENT Items which are not sharp including: paper cups, tissues, dressings, soiled bandages, plastic equipment, urinary/suction catheters, disposable diapers, Chux, plastic tubing, medical gloves, etc. Store medical supplies in a clean/dry area. Dispose of used items in waterproof (plastic) bags. Fasten securely and dispose of bag in the trash. NON-DISPOSABLE ITEMS & EQUIPMENT Items which are not thrown away including: soiled laundry, dishes, thermometers, commode, walkers, wheelchairs, bath seats, suction machines, oxygen equipment, mattresses, etc. Soiled laundry should be washed apart from other household laundry in hot, soapy water. Handle these items as little as possible to avoid spreading germs. Household liquid bleach should be added if viral contamination is present (a 1 part bleach to 10 parts water solution is recommended.) Equipment used by the patient should be cleaned immediately after use. Small items (except thermometers) should be washed in hot, soapy water, rinsed and dried with clean towels. Household cleaners such as disinfectant, germicidal liquids or diluted bleach may be used to wipe off equipment. Follow equipment cleaning instructions and ask your nurse/therapist for clarification. Thermometers should be wiped with alcohol before and after each use. Store in a clean, dry place. Liquids may be discarded in the toilet and the container cleaned with hot, soapy water, rinsed with boiling water and allowed to dry. SHARP OBJECTS Items which are sharp including: needles, syringes, lancets, scissors, knives, staples, glass tubes or bottles, IV catheters, razor blades, disposable razors, etc. Place used sharps directly into a clean rigid container with a screw-on or tightly secured lid. Use a hard plastic or metal container. Before discarding a container, reinforce the lid with heavy-duty tape. Never overfill the containers or recap needles once used. DO NOT use glass or clear plastic containers and never put sharps in containers that will be recycled or returned to a store. Seal the container with tape and place in the trash can or dispose of according to area regulations. SPILLS IN THE HOME Blood and other body fluids. Blood/body fluid spills are cleaned by putting on gloves and wiping fluid with paper towels. Use a cleaning solution of household bleach and water (1 cup of bleach to 10 cups of water) to wipe the area again. Double bag used paper towels and dispose of in the trash.

28 26 SECTION V. CONSUMER EMERGENCY PREPAREDNESS PLAN Emergency Contact Information AGENCY PHONE NAME AGENCY Police Fire EMS Local Red Cross Local Emergency Mgmt Office Physician Pharmacy Neighbor/Close Friend Relative Radio or TV Stations that have Emergency Broadcast Announcements TV RADIO KBOI CH 2 KBSX News 91.5 FM boisestatepublicradio.org KAID CH 4 KBSU Classical 90.3 FM boisestatepublicradio.org KIVI CH 6 KIZN New Country 92.3 FM KTVB CH 7 KNIN CH 9 KTRV CH 12 KQFC New Country 97.9 FM KTSY Christian 89.7 FM KTHI Classical Hits FM Make a List of: (Have On Hand) Medication (List) Location Medical information Location Allergies and Sensitivities List Location Copies of Health Insurance Cards Other Insurance Cards Identification Cards A Cell Phone Emergency Food Flashlights and extra Batteries Zip Lock plastic bags for food, waste, etc A small battery-operated radio and extra batteries. KTLT 80 s & Now FM KFXD Sports Talk 630 AM KBOI Conserv. Talk 670 AM KIDO Talk Variety 580 AM Location in the Home or Facility (as per protocol)

29 27 CLASSIFICATION OF EMERGENCY AND PATIENT CARE Level of Emergency Description Level 1 A condition which is potentially life threatening, requires ongoing medical treatment, or requires assistance of a medical device to sustain life (ie., there is a potential wide spread power black-out and the patient is on ventilator), the home environment and support system will be reviewed. When appropriate, arrangements for evacuation to an acute care facility will be made. These patients will be seen immediately. The Agency will obtain assistance from emergency personnel as necessary. (ie. Oxygen, Multiple Assistive Devices, Infusion, Ventilator). In the case that the patient is in a care facility, please follow the facility protocol. Level 2 The patient has in-home support that may be mobilized in the event of disaster. The family is responsible for evacuation and care of the patient. The patient with the greatest need for care will be seen as soon as possible by available staff. (ie., Patients requiring daily insulin injections, IV medications, sterile wound care of a wound with a large amount of drainage.) In the case that the patient is in a care facility, please follow the facility protocol. Level 3 Services could be postponed hours without adverse effects on the consumer (Examples: a new, insulin dependent diabetic able to self-inject, consumer under cardiovascular and/or respiratory assessment, and a consumer that requires sterile wound care to a wound with minimal amount or no drainage.) In the case that the patient is in a care facility, please follow the facility protocol. Level 4 The consumer has maximum in home support through the family structure. The family is totally responsible for the care and transfer. Services could be postponed hours without adverse effect on the consumer (Examples: a postoperative consumer with no open wound, a consumer who is anticipated to be discharged within the next 1014 days, a consumer who requires routine catheter changes.) In the case that the patient is in a care facility, please follow the facility protocol.

30 28 SECTION VI. DURABLE MEDICAL EQUIPMENT (DME) MEDICAL EQUIPMENT/OXYGEN Keep manufacturer s instructions for specialized medical equipment with or near the equipment. Perform routine and preventive maintenance according to the manufacturer s instructions. Keep phone numbers available in the home to obtain service in case of equipment problems or equipment failure. Have backup equipment available, if indicated. Provide adequate electrical power for medical equipment such as ventilators, oxygen concentrators and other equipment. Test equipment alarms periodically to make sure that you can hear them. Have equipment batteries checked regularly by a qualified service person. Bed side rails are properly installed and used only when necessary. Do not use bed rails as a substitute for a physical protective restraint. If bed rails are split, remove or leave the foot-end down so that patient is not trapped between the rails. Mattress must fit the bed. Add stuffers in gaps between the rails and mattress or between the head and foot board and mattress to reduce gaps. Keep all oxygen equipment away from open flame. There is no smoking around oxygen. Do not allow oxygen to freeze or overheat. Register with your local utility company if you have electrically powered equipment such as oxygen or ventilator. PROPER TECHNIQUES WITH A WALKER Using Your Walker Lift up do not slide your walker. Do not pull on the walker when standing up. Remove all throw rugs in your home. Do not walk on slippery surfaces. Check the rubber tips for wear and tear. Standing with Your Walker When standing with arms at sides, the walker handgrips should be at wrist level. In rest position, keep the walker in front of you with your weight on the good (or stronger) leg and hands. In rest position your elbow should be at a 30 degree bend when your hands are on the handgrip. Walking Your Walker Pick up the walker and place it one foot ahead of you. Place your affected (weaker) leg ahead of your unaffected (or stronger) leg. Push down with your hands and bring forward your unaffected (or stronger) leg. Keep repeating sequence. Always walk with the assistance of another person if you feel weak or unsteady. If you suddenly feel as if you might fall, have the person assisting you gently lower you to the floor. Call the hospice if there are any problems with your walker or if you need help learning how to use your walker.

31 29 SAFETY TIPS FOR HOSPITAL BEDS AND WHEELCHAIRS Electric Hospital Beds Never operate your electric bed if the unit has a damaged cord or plug. Keep the cord away from wet or heated surfaces. Make sure the side rails are properly in place. Do not use side rails as push handles if you are moving the bed. Do not lean on the side rails heavily when sitting beside the bed. Lock the brake (located on the wheels) when the patient is in bed or being transferred out of the bed to a chair or commode. Wheelchairs Never force a wheelchair to open or close. Never push out on the arms of the wheelchair. Lock the brake whenever patient is being transferred in or out of the chair. The patient should wear non-slip slippers or supportive shoes when transferring to and from the wheelchair. Please call the hospice if there are any problems with your Hospital Bed or Wheelchair. MOVING THE PATIENT FROM BED TO WHEELCHAIR OR COMMODE STEP 1: Moving the patient toward the edge of the bed Move the patient s head and shoulders. Move the patient s legs. Slide your arms well under the patient s hips. Slide your back, muscles tightened and in good alignment, move back as one unit, moving the patient s hips toward the edge of the bed. STEP 2: Helping the patient to sit up in bed If patient has a hospital bed, elevate the bed. If not a hospital bed, place one arm under the patient s shoulder. Instruct the patient to push their elbow into the bed while lifting. With the other hand, assist the patient to swing their legs over the edge of the bed, moving the patient to sitting position. STEP 3: Helping the patient to stand, and then sit Position your feet well under the patient. While facing the patient, firmly grasp each side of the patient s rib cage and push one of your knees against one of the patient s knees. Rock the patient forward until the patient is bearing weight. Make sure the patient locks the knees for stability and strength. Observe the patient for pallor and ask about dizziness. Give the patient a moment to feel balanced before providing assistance in pivoting to chair or commode.

32 30 SECTION VII. PAIN MANAGEMENT PATIENT RIGHTS As a patient of this hospice agency, you can expect that: your pain level will be assessed at every visit your reports of pain will be believed you will receive information about your pain and pain relief measures a concerned staff will be committed to pain prevention and management you can receive effective pain management PATIENT RESPONSIBILITIES As a patient of this hospice agency, we will expect you to: take your medications as ordered - usually around the clock to prevent the pain from returning ask your nurse what to expect regarding pain and pain management. discuss your relief options with your nurse work with your nurse to develop a plan ask for pain relief when pain first begins help your nurse assess your pain by being forthcoming and descriptive tell your nurse if your pain is not relieved tell your nurse about any worries you have Pain is considered the 5th vital sign and thus is of utmost importance. Every patient is asked about pain on admission and then further assessment is completed. You will be asked about pain during every visit. If you are experiencing pain or have experienced pain in the recent past, your nurse or clinician will ask you to rate the pain and describe it. While most of us think only of physical pain, there are other types as well that Keystone Hospice addresses. Emotional, social, and spiritual pain are assessed and handled by our social workers, chaplains and volunteers. Good pain control can be a key to maintaining independence and keeping a high quality of life. It allows you to do the most you possibly can, to feel more rested and more in control of your life. It also helps to put your family and friends minds at ease. They can usually tell when you are in pain, even if no one talks about it. The best plan is to be tough on pain, to get control of it, so you can feel more like yourself again. Sometimes people assume we can tell they are having pain, but this is not always true. Only you know when you are in pain, how bad it is, and what it feels like. When you tell us about your pain, you help us do a better job. You are not bothering us, you are not distracting us from other important treatments, and you are definitely not a complainer. You are a partner in your care. Sometimes people are afraid to ask questions about pain or pain medicines. Look over the following information. Have any of these worries stopped you from talking about your pain? FREQUENTLY ASKED QUESTIONS REGARDING PAIN MANAGEMENT: Q: I m afraid I ll get addicted to the medicine. There is very little risk for addiction to the pain medicine when it is used correctly. The addiction that most people think of, that is taking a drug to get high and escape the reality of life simply does not occur in proper pain management. Instead of trying to escape from life, people with pain take the medicines to re-enter life. Good pain relief offers better rest and more energy to be with family. The body does develop a physical dependence to certain pain medicines. Opiates like morphine or other strong pain medicines, may causes withdrawal symptoms if stopped suddenly. This is not a sign of addiction! This problem is easily avoided if the medicines are stopped over a period of time. When you take your pain medications as your doctor prescribes, you are using them correctly and legally. If pain goes away, your doctor may be able to gradually and safely decrease pain medicines.

33 31 Q: I m afraid to use pain medicine now. What if the pain gets worse later and drugs won t work anymore? Shouldn t I save it? It s important to understand that pain does not always get worse. It may decrease or even go away. If it does get worse, your hospice team has several choices: Sometimes a simple increase in dose will help. Some medicines can be increased as much as necessary they have no upper limit. We normally start with a very low dose of a liquid pain killer which is increased as the need arises. Sometimes changing medicines helps. Sometimes different drugs work well when taken together. There also may be other methods you can use to help control your pain, such as: relaxation, distraction, imagery, massage, etc. Talk to your hospice nurse to see if these or other methods may be incorporated into your pain control regimen. It also may be helpful to keep a pain control diary. Ask your nurse for more information. It is important to talk with your hospice nurse or physician. Do not make any changes yourself. It may take a little time to adjust your pain medicines. Remember this: most pain can be relieved! Q: They want me to take strong pain medicine. Does that mean they ve given up on me? Absolutely not! Strong pain medicine does not mean anyone s given up on you. Do not think that your comfort is less important than your treatments. Both are important and you do not have to choose between them. When you do not hurt, you might find that you can move better and breathe more deeply. You will be able to enjoy your family and friends more. So, being comfortable is important to your health. Q: I want to take pain medicine but I m worried about side effects. What if I get constipated? Many pain medicines do have side effects. Constipation is a common side effect of many medicines called narcotic analgesics. It is Keystone Hospice s protocol to include a stool softener in the pain management regimen to prevent this side effect. Check with your nurse before using a new laxative. Q: Will I get drowsy if I take pain medicines? Sometimes pain medicines can make you feel drowsy at first. Often this will go away after a few days as your body adjusts. If your pain has made you lose sleep, you may finally get to catch up on much needed rest. Check with your nurse if the drowsiness lasts more than a few days or makes it difficult to awaken you. Q: Won t my stomach get upset? Sometimes pain medicines can upset your stomach. This is another problem which may last just a few days. If it does not go away, check with your nurse about ways to decrease the nausea without giving up pain control. Q: I don t want to be confused. Mental confusion may mean the dose (the amount of pain medication) needs adjusting. We will be monitoring you for signs of this but call your nurse about problems with confusion. Q: If I talk about my pain, everyone will think I am a pest. I don t want to complain. It s best to tough it out. Some people think it s a sign of strength to keep pain a secret and to refuse to take pain medicines. They use words like sissy or wimp and say they don t want to be a bother. Just as it takes a while for diabetes to adjust to insulin, it will take a while to adjust to your pain medication(s). You should not sacrifice comfort because you are worried about side effects. Remember, side effects usually can be controlled or prevented. It is important to let your nurse know if you are having problems so you can work together to help you feel comfortable.

34 32 MORE INFORMATION ON PAIN Pain is a sensation or feeling that hurts enough to make you uncomfortable. You may feel mild or severe discomfort. Pain can only be described by the person who is feeling it. Pain can be caused by: Pressure Tumor growth Infection or inflammation Poor blood circulation Blockage of an organ or tube in the body Bone fractures caused by cancer cells that have spread to the bone After-effects of surgery or radiation Stiffness from not being active Side effects from medication (i.e., constipation, mouth sores) Cancer pain depends on the type of cancer, the state of the cancer and your tolerance of pain. The perception of discomfort can be aggravated by fatigue, lack of sleep, anxiety, tension and depression. What to take note of and report to hospice personnel: What seems to be causing the pain? (i.e., anxiety, movement, fear of taking medications, physical and emotional changes due to the disease process or illness) When does the pain come back? What have you found that helps the pain subside? Do you notice the pain more in the morning or evening? What caregivers can do to help: Comfort measures may include: relaxation techniques, assistance with care, massages, repositioning. Spend time talking with the person about what is causing the discomfort. Help to ensure medication is taken as directed by the physician. As the pain is controlled with medications, try to encourage more activity. Talk with the person about how pain relates to your emotions. Offer/accept emotional support. Manipulate environment to provide periods of rest, such as: o Making room dark o Quiet time o Time alone o Position for comfort o Provide periods of uninterrupted sleep What not to do: Do not keep the main focus on the pain. Do not suddenly stop giving pain medications or other medications. Do not ignore or overlook the pain or discomfort. When to call the Hospice Nurse: If any new or severe pain occurs. If pain or discomfort is not controlled by present medication schedule. If you have any questions about the medications.

35 33 PAIN MONITORING FLOW CHART Legend: Interventions/Treatments RX = Medication I = Ice D = Diversion R = Repositioned H = Heat M = Massage MT = Music therapy V = Visitors S = Spiritual (prayer) Effect Key + = Good Results - = No result Temp = Temporary Relief DATE TIME PAIN DESCRIPTION TREATMENT EFFECT PAIN

36 34 PAIN MONITORING FLOW CHART Legend: Interventions/Treatments RX = Medication I = Ice D = Diversion R = Repositioned H = Heat M = Massage MT = Music therapy V = Visitors S = Spiritual (prayer) Effect Key + = Good Results - = No result Temp = Temporary Relief DATE TIME PAIN DESCRIPTION TREATMENT EFFECT PAIN

37 35 BOWEL PROGRAM Most Hospice patients have some difficulty with their bowel movements. There are several reasons why you may be constipated. Changes in your diet, decreased fluid intake, or decreased activity may contribute to constipation. However, the use of pain medications (narcotic analgesics) is usually the major cause of constipation. Untreated constipation can lead to a more serious condition (impaction or bowel obstruction) and a daily bowel program can help to prevent such problems. The overall goal is to have a bowel movement approximately every two to three (2-3) days. The following guidelines should help you maintain normal bowel function. 1. Drink plenty of liquids, especially if eating highfiber foods. Tea, hot lemon water and juices such as prune juice may be effective. 2. Try to have a bowel movement at the same time of the day. Be sure to allow adequate time on the toilet or bedpan. 3. Keep a record of your bowel movements and note whether they are hard or soft. 4. Take your stool softener/laxative pill as prescribed. The dose can range from two to eight (2-8 pills) per day or more if needed. Examples of such preparations are Peri-colace, Senokot S or Doxidan. 5. Other laxative preparations can be added if the stool softener/laxative pill alone does not work. Examples of these are Dulcolax, Milk of Magnesia, Halley s MO or lactulose. 6. Call the nurse if you do not have a bowel movement within two or three (2-3) days. It might be necessary for you to have a rectal suppository, an enema, or be checked for a stool impaction. 7. Call the nurse if you have any of the following symptoms: abdominal distention or bloating, rectal pain with your bowel movement, the urge but inability to pass stool, oozing of liquid stool after no bowel movement for several days, or rectal fullness and pressure. 8. Keep track of your bowel movements on a calendar.

38 36 SECTION VIII. MEDICATION TEACHING GUIDE Directions: In the first column, indicate with an X in the appropriate box, the medication class or classes that should be referenced for patient teaching needs. Drug Classification Example(s) Common Use(s) Precautionary Warnings Analgesics Non-Narcotic Analgesic Narcotic Analgesics Non-Steroidal Anti-inflammatory Drugs (NSAIDS) Antacids Acetaminophen (Tylenol) Combination Products: oxycodone/acetaminophen (Percocet ) propoxyphene/acetaminophen (Darvocet )a hydrocodone/acetaminophen (Vicodin ) Tramadol (Ultram ) Morphine Duragesic Oxycodone Aspirin Ibuprofen (Motrin, Advil ) Naproxen (Naprosyn, Aleve ) Trilisate Aluminum, Calcium, Magnesium Hydroxides Relieves mild to moderate pain and reduces fever Relieves mild to moderate pain Relieves moderate to severe pain Relieves inflammation or swelling that can cause pain and/or reduces fever Relieves stomach upset such as sour stomach, acid indigestion and heartburn - Limit total acetaminophen dosage to 4 gm/day. - May be contained in many combination drug products. - Avoid alcohol - May cause drowsiness, dizziness, or altered perception avoid driving and operating machinery - Avoid alcohol - May cause drowsiness, dizziness, changes in breathing, constipation, urinary retention, itching or dry mouth avoid driving and operating machinery - Avoid alcohol - Do not crush, break or chew long-acting or time-released medications - May cause stomach upset, fluid retention, blurry vision, itching, skin rash - Watch for unusual bruising or bleeding, black/ tarry stools, dizziness or other signs of bleeding. - Take with food, antacids or milk - May cause constipation or diarrhea - May decrease effect of digoxin, iron compounds, tetracycline - Separate administration of other medications by at least 2 hours to limit possible interactions, however some medications may require more time H2 blockers Famotidine (Pepcid ) Ranitidine (Zantac ) Decreases stomach acid secretion to prevent or treat ulcers, gastroesophageal reflux disease, dyspepsia and heartburn - May cause headache, dizziness, constipation or diarrhea - May interfere with absorption of itraconazole, ketoconazole, some antiviral medications, among others Proton pump inhibitors (PPIs) Omeprazole (Prilosec ) Aciphex Pantoprazole (Protonix ) Nexium Decreases stomach acid secretion to prevent or treat ulcers, gastroesophageal reflux disease, dyspepsia - May cause headache, dizziness, constipation or diarrhea - May interfere with absorption of iron compounds, itraconazole, ketoconazole, some antiviral medications, among others * Please note: This document is intended for educational and informational purposes only, and not intended as legal or clinical advice. This document does not include all actions, side effects, contraindications, warnings and interactions.

39 37 Drug Classification Antianxiety Agents Example(s) Common Use(s) Precautionary Warnings Lorazepam (Ativan ) Alprazolam (Xanax ) Clonazepam (Klonopin ) Diazepam (Valium ) Relieves anxiety, helps initiate and/or maintain sleep - May cause dizziness, drowsiness, confusion, dry mouth avoid driving and operating machinery - Avoid alcohol - Do not stop taking this medication without first talking to the nurse and/or doctor Antiarrhythmics Amiodarone (Cordarone ) Propafenone (Rythmol ) Sotalol (Betapace ) Helps regulate heart rhythms - May cause low blood pressure, dizziness, drowsiness, nausea, headache, changes in urination Antibiotics Levofloxacin (Levaquin ) Ciprofloxacin (Cipro ) Sulfamethoxazole/Trimethoprim (Bactrim ) Used to treat various infections and manage symptoms associated with those infections - Depending on the specific antibiotics, may cause nausea, vomiting, diarrhea, abdominal pain, cramping, loss of appetite - Various drug interactions may exist, depending on the specific antibiotic Anticholinergics Atropine Hyoscyamine (Levsin ) Manages excessive secretions - May cause dry mouth, blurred vision, drowsiness, constipation, urinary retention, weakness Anticoagulants Warfarin (Coumadin ) Prevents blood clots - May cause GI irritation with anorexia, vomiting, diarrhea, hemorrhage, bleeding, bruising. - Many drug interactions. Anticonvulsants Phenytoin (Dilantin ) Carbamazepine (Tegretol ) Valproic acid (Depakote ) To prevent seizures and/ or treat nerve pain - May cause nausea, vomiting, changes in blood sugar levels, swollen or tender gums, loss of taste, weight gain, skin rash. - Many drug interactions Levetiracetam (Keppra ) To prevent seizures - May cause dizziness, drowsiness, headache, diarrhea, loss of appetite Gabapentin (Neurontin ) To prevent seizures and/ or treat nerve pain - May cause constipation, nausea, slurred speech, tremors, weight gain, difficulty walking Antidepressants Tricyclics Amitriptyline (Elavil ) Desipramine (Norpramin ) Nortriptyline (Pamelor ) To treat depression and/or nerve pain - May cause urinary retention, constipation, weight gain, dry mouth, blurred vision, hypotension, sleep changes, suicidal thoughts in children and young adults SSRIs Lexapro Citalopram (Celexa ) Fluoxetine (Prozac ) Sertraline (Zoloft ) To treat depression Other Trazodone (Desyrel ) To treat depression, generalized anxiety disorder and insomnia Antidiabetic Agents Insulin Glipizide (Glucotrol ) Glyburide (Diabeta ) Metformin (Glucophage ) To lower blood sugar associated with diabetes or drug-induced hyperglycemia To lower blood sugar associated with diabetes or drug-induced hyperglycemia - May cause nausea, diarrhea, headache, anorexia, dyspepsia, constipation, insomnia, weight loss, sleep changes, suicidal thoughts in children and young adults - May cause headache, drowsiness, weakness, stomach upset, muscle ache, suicidal thoughts in children and young adults - Watch for signs of hypo- or hyperglycemia - Hypoglycemia (low blood sugar): weakness, shaking, sweating, dizziness, hunger, headache, nausea - Hyperglycemia (high blood sugar): thirst, increased urination, abdominal pain, drowsiness, nausea, difficulty breathing - Take as directed with meals - May cause diarrhea, nausea, vomiting, bloating, loss of appetite, metallic taste, weight loss

40 38 Drug Classification Antidiarrheal Agents Antiemetics Example(s) Common Use(s) Precautionary Warnings Loperamide (Imodium ) Relieves diarrhea - May cause dry mouth, dizziness, drowsiness, difficulty urinating, constipation Prochlorperazine (Compazine )s Promethazine (Phenergan ) Relieves nausea and/or vomiting - May cause dizziness, drowsiness, blurred vision, dry mouth, constipation Metoclopramide (Reglan ) Relieves nausea and acid indigestion by increasing stomach movements - May cause diarrhea, drowsiness, fatigue, movement disorders (i.e. Parkinson-like syndromes) Ondansetron (Zofran ) Helps to prevent and manage nausea and/or vomiting associated with chemotherapy, radiation therapy and post-surgery. - May cause constipation or diarrhea, headache, dizziness - Avoid alcohol Antihistamines Diphenhydramine (Benadryl ) Hydroxyzine (Atarax, Vistaril ) Reduces itching and treats allergies and allergic reactions. - May cause dry mouth, blurred vision, drowsiness, constipation, urinary retention, weakness avoid driving and operating machinery Antihypertensive Agents Enalapril (Vasotec ) Lisinopril (Prinivil, Zestril ) Propranolol (Inderal ) Amlodipine (Norvasc ) Diltiazem (Cardizem ) Verapamil (Calan ) Regulates/lowers blood pressure - May cause headache, flushing, blurred vision, stomach upset, dizziness, fatigue, weakness, constipation, cough Antiparkinson Agents Levodopa/Carbidopa (Sinemet ) Manages symptoms as - sociated with Parkinson s Disease and other similar movement disorders - May cause trouble sleeping, nightmares, nausea, vomiting, weakness, drowsiness, loss of appetite, muscle twitching - Avoid alcohol - May cause discoloration of sweat and/or urine - Food high in protein may impair absorption. Take 30 minutes before eating or 1 hour after meals. Antitussive products Guaifenesin DM (Robitussin DM ) Benzonatate (Tessalon ) Promethazine with codeine Homatropine with hydrocodone (Hycodan ) To suppress cough. Depending on the product, may also assist with clearing up nasal and lung secretions - May cause dizziness, drowsiness, constipation, nausea - Some of these products are a combination of different medications (e.g. expectorant + antitussive, antihistamine + antitussive, etc.) Try to drink a lot of fluids (as tolerated) when - taking these medications Bronchodilators (inhaled) Albuterol (Accuneb, Proventil HFA, Ventolin HFA, Proair HFA ) Ipratropium bromide (Atrovent HFA ) Combivent Duoneb Xopenex Helps prevent and manage shortness of breath associated with asthma or other chronic obstructive airway diseases Cardiac glycosides Digoxin (Lanoxin ) To control heart rate and manage heart failure - May cause restlessness, blurred vision, rapid heart rate, increased blood pressure, dry mouth - May cause nausea, vomiting, headache, diarrhea, loss of appetite, fatigue, changes in vision - Changes in vision may indicate toxicity Corticosteroids Prednisone Dexamethasone (Decadron ) Methylprednisolone (Medrol ) Relieves inflammation or swelling that can cause pain - May cause increased appetite, weight gain, sleep disturbances, fluid retention, stomach upset, behavioral changes - Take with food

41 39 Drug Classification Example(s) Common Use(s) Precautionary Warnings Corticosteroids (inhaled) Fluticasone (Flovent ) Used to decrease inflammation in the lungs associated with asthma and chronic obstructive airway disease - Never use for an acute asthma attack for maintenance therapy only - If using a bronchodilator inhaler like albuterol, use that first wait 5 minutes or more before using this medication - May cause coughing, hoarseness, dry mouth, headache, flushing or unpleasant taste/loss of taste Diuretics Hydrochlorothiazide Furosemide (Lasix ) Bumetanide (Bumex ) Spironolactone (Aldactone ) Decreases excess body water and lowers blood pressure - May cause dizziness, weakness, leg cramping, stomach upset Laxatives Senna-S Docusate sodium (Colace ) Bisacodyl (Dulcolax ) Fleet enema Milk of Magnesia Lactulose Sorbitol To treat short-term constipation and/or prevents medication (e.g. opioid) induced constipation - May cause abdominal cramping, diarrhea, sweating, upset stomach - Depending on the specific medication, laxative effects may take effect within minutes to a few days Muscle relaxants Baclofen Cyclobenzaprine (Flexeril ) Carisoprodol (Soma ) Relieves muscle spasms and cramping - May cause confusion, nausea, dizziness, headache, difficulty sleeping - Avoid alcohol Neuroleptics Chlorpromazine (Thorazine ) Haloperidol (Haldol ) Risperidone (Risperdal ) Seroquel Used to treat psychoogical ldisorders such as schizophrenia. Also decreases behavioral disturbances such as agitation and delirium. - May cause dizziness, drowsiness, stomach upset, constipation, anxiety, weight gain, menstrual changes, dry mouth, blurred vision, movement disorders, urinary retention - Avoid alcohol Nitrates Quick acting Nitroglycerin (Nitrostat Nitro-Dur, Nitro Bid, Minitran ) Used to relieve chest pain or discomfort as - sociated with angina. - May cause dizziness, weakness, headache, flushing, sweating, stomach upset, irregular heartbeat- Follow the directions on the prescription label - Do not take this medication if you are taking medications for erectile dysfunction (e.g. Viagra, Levitra, Cialis, etc.) Moderate/long acting Isosorbide mononitrate (Imdur, Ismo ) Isosorbide dinitrate (Isordil ) Used for the prevention and management of angina - May cause flushing or rash - These medications should not be used to manage an acute episode of chest pain - Do not take this medication if you are taking medications for erectile dysfunction (e.g. Viagra, Levitra, Cialis, etc.) Sedative/Hypnotics Temazepam (Restoril ) Zolpidem (Ambien ) Other(s) (ex. compounds, supplements, other medications/classes not listed) To help promote and/or maintain sleep - May cause headache - Avoid alcohol - Avoid driving and operating machinery Patient/family instructed & provided information on medication management & disposal

42 40 SECTION IX. COMPLEMENTARY THERAPIES OFFERED BY KEYSTONE HOSPICE MASSAGE THERAPY: Massage is one of the oldest, simplest forms of therapy and is a system of stroking, pressing and kneading different areas of the body to relieve pain, as well as to relax, stimulate, and tone the body. Some of the ailments we use massage for are anxiety, arthritis, muscle aches, depression, insomnia, high blood pressure, Parkinson s disease, back and neck pain, and much more. Massage offers a drug-free, non-invasive and humanistic approach based on boosting the body s natural ability to heal itself. Massage also provides another therapeutic component largely absent in today s world: tactile stimulation or, more simply, touch therapy. ACUPUNCTURE: Originating in China thousands of years ago, Acupuncture is the technique of inserting fine needles into specific points on the body for pain relief and other therapeutic purposes. This ancient modality can be used to treat anxiety, arthritis, constipation, diarrhea, headache, muscle spasms, nausea, sleep disorders, and many other ailments. Acupuncture is performed by a licensed acupuncturist upon patient request. AROMATHERAPY: At Keystone, we do aromatherapy using a unique blend of essential oils. The oils that are used are determined based on our medical assessment of the individual patients needs or their requests. We use aromatherapy to help our patients relax, enhance their current physical and emotional state, boost immune, respiratory, and circulatory systems, and help relieve anxiety, pain, agitation, and other unpleasant symptoms. We administer aromatherapy by dropping oils into a vaporizer, using an electric diffuser, adding oils to bath water, and even by adding the oils to a lotion used for massage. REIKI: Reiki is a type of subtle energy work in which healing is performed by the touch of the hands, allowing energy to flow to the patient via the Reiki practitioner just by intention. This simple, non-invasive healing system channels healing energy to promote health and well being of the entire physical, emotional and spiritual body. We are able to aide in making our patients more comfortable by treating ailments and helping to promote the wholeness of Mind, Body and Spirit. CRANIOSACRAL THERAPY: Craniosacral Therapy is a relaxing technique that uses gentle pressure applied to the bones of the head, face, and lower spine, to encourage body rebalancing. This occurs through the restoration of the normal flow of cerebrospinal fluid, and other subtle body relationships. Besides relieving symptoms such as pain, numbness, weakness, and tingling, craniosacral therapy helps to reduce swelling, improve vision, sharpen cognition, improve functioning of organs, enhance breathing, increase energy levels, and allow restful sleep with relaxation. PET THERAPY: Pets have a longstanding history of providing faithful companionship and showing unconditional love for the humans in their lives. This companionship and love creates a powerful emotional bond between animal and human. The bonds that humans share with pets result in very positive effects: reduced anxiety and stress, increased feelings of relaxation, and an overall improved outlook on life. In seeking to provide patients with the best end-of-life care possible, many hospice organizations employ the use of animal companionship as a form of therapy. Pet therapy, also known as animal-assisted therapy, in the hospice setting uses the natural bond between humans and animals to provide comfort, peace, and soothing companionship to terminally ill patients.

43 41 KEYSTONE HOSPICE IS IDAHO S PREMIER HOLISTIC HOSPICE, OFFERING PATIENTS AN EXTENSIVE MENU OF COMPLEMENTARY ALTERNATIVE MODALITIES FREE OF CHARGE. MANY KEYSTONE PATIENTS TAKE ADVANTAGE OF MASSAGE, A THERAPY THAT BEN- EFITS BOTH THE PATIENT AND THEIR CAREGIVER. TECHNIQUES APPROPRIATE FOR ALL STAGES Sensitive massage techniques Gentle rocking has the general relaxation effect to the nervous system. Can rock a specific area such as an arm or leg (i.e., to rock the arm, cradle like a baby, rock it using slow rhythmic movements) Use finger tips in a light, circular motion on the cheeks or back of head Use the outside of the hand, stroking along the face from the earlobe to the chin Gentle compression on the arms, legs, or upper back Use a weighted neck roll the sensory stimulation of weight and static pressure has an inhibitory, calming effect on the central nervous system. Gentle Range of Motion Move the joints within the comfortable range. Use slow, smooth motion. This is NOT stretching or forcing in any way. Move the joint only within the comfort level of the patient. Slow Stroke Back Massage This is done with the patient side-lying. Long, alternating strokes are applied to the large muscle groups along either side of the spine. Stroke down the body from the upper to the lower back. This is a good technique for promoting sleep and deep relaxation. TECHNIQUES APPROPRIATE FOR THE ACTIVE DYING STAGE Attentive holding Sometimes the most compassionate thing you can offer a person is holding or light touch. This can be very calming, comforting, and connecting. This could be something as simple as resting your hand under the patient s hand, shoulder, or head. Lifting and shifting This is moving a party of the body for positional change and to ease pressure. Gently lift a part of the body, such as an arm or a leg, and move it slightly to a different place. Shared breathing Align your breath with your patient s. This is a way to deepen the connection and shared experience. Adjust your breathing pattern to synchronize with the other persons. If the person s breath is irregular, you can promote more rhythmic breath by placing your hand gently on the chest and focus on your own rhythmic breath. This is good to use with someone who is nearing death and appears anxious, fearful, or in pain. Encircling Hold Rest one hand under the patient s hand while your other hand cradles the shoulder.

44 42 Massage helps to alleviate aches and pains Massage increases circulation Massage provides sensory stimulation Effects on the recipient Ease of movement Able to perform tasks with greater comfort (e.g., transfers) Relief from cycle of pain Reduced need for pain medication Decrease in risk for pressure ulcers & skin tears Joint flexibility increases Improved skin condition How the caregiver benefits Care and mobility tasks are performed with more ease and less resistance because the patient is more physically comfortable Non-pharmacological option for pain relief is gained Fewer complaints Decrease in skin tears and pressure ulcers to treat Tasks performed with the patient are more easily accomplished due to greater joint movement & increased ROM May aide in ease of engaging patient in activities Personal care of patient completed with less frustration and in less time Concerns about physical safety of patient may be lessened Massage induces a relaxation response Quality of sleep increases Anxiety & depression decreases Enjoys an increased overall sense of well-being Bedtime routines may be done in less time and with less resistance The home or care unit may have a calmer atmosphere More energy due to less time spent with patients that might otherwise be restless or up all night Massage supports psychosocial well-being Feelings of isolation & loneliness are minimized Increased interaction with others A means of non-verbal communication Reassurance to the patient that they are not alone Gains a way to communicate with patient in a non-verbal way Can be used as a means to establish trust Greater feeling of satisfaction and meaning given to the work of care giving Massage may enhance spiritual well-being Feeling of being grounded in the present moment Acceptance and acknowledgement of one s worth despite physical or mental limits Deep satisfaction in feelings of contribution to the quality of life May experience a feeling of sharing and witnessing of a sacred moment An opportunity to feel a moment of relaxation or respite from the demands of care giving The caregiver s inherent ability to be a healing presence is reaffirmed

45 43 SECTION X. PREPARING FOR THE DYING PROCESS When a person enters the final stage of the dying process, two different but interrelated dynamics are at work. On the physical plane, the body begins the final process that ends when all physical activities cease to function. Usually, this is an orderly and progressive series of physical changes that, rather than invasive medical intervention, are best responded to through comfort enhancing measures. The second dynamic of the dying process occurs on the emotional-spiritual-mental plane. This dynamic may appear as a withdrawal from one s present surroundings and relationships or a letting go of all that keeps one attached to this life. This process also tends to follow its own path and schedule, but it often includes activity or conversations to resolve whatever is unfinished in one s life. Examples of this work may be attempts to resolve misunderstandings or broken relationships, or to make preparations for the wellbeing of a loved one following one s own death. There is sometimes the need to receive family permission to die or to let go. For patient and for family, it is helpful to offer words of forgiveness, if needed, as well as words of appreciation and love. Acceptance and compassionate support assist both patient and family through this time of transition. When a person s body is ready to stop, but he/she still has important matters that are not resolved or a significant individual with whom he/she has not made peace, the patient may linger even though very debilitated. On the other hand, when a person is emotionally-spiritually-mentally ready to let go, but his or her body has not completed its final physical process, he/she will continue to live. The person dying appears to have some control over the process, and sometimes staff, reading the signs, can offer estimates of when death is approaching. Ultimately, however, one s death is not under human control or prediction. The goal of hospice care at this point in your care is to help you and your family to prepare for dying, death, and for their continued living. Working with hospice staff to control symptoms that cause pain and discomfort, taking responsibility to complete unfinished business, and understanding what the dying process looks like will give you active ways to interact with loved ones as caregivers. The physical and emotional-spiritual-mental changes which indicate impending death are offered to you below to help you understand the natural circumstances which may happen and how you can respond appropriately. Not all of these changes will occur with every person, nor will they occur in this particular sequence. Each person is unique, and what has been most characteristic of the way your loved one has lived consistently, may affect the way this final death phase and release occurs. This is not the time to try to change your loved one, but the time to give full acceptance, support, and comfort. PHYSICAL CHANGES WITH SUGGESTED RESPONSE COOLNESS - The person s hands and then arms and feet, then legs become increasingly cool to the touch and at the same time the color of the skin may change. This is a normal indication the circulation of blood is decreasing to the body s extremities and being reserved for the most vital organs. Keep the person warm with a blanket. Do not use an electric blanket. SLEEPING The person may spend an increasing amount of time sleeping, and appear to be noncommunicative and unresponsive. The normal change is due in part to changes in body chemistry. Sit with your loved one, hold hands and speak softly and naturally. Do not talk about the person in the person s presence as the sense of hearing remains intact during the dying process. Speak to him or her directly as you normally would, even though there may be no response. DISORIENTATION The person may seem confused about the time, place and identity of family and friends. This is also due in part to the body chemistry changes. Sometimes a paper or white board reminder of the day and time is helpful. Identify yourself by name before you speak rather than ask the person to guess who you are. Speak softly, clearly and truthfully when you have to communicate for the patient s comfort, such as, It is time to take your medication, and explain the reason for the communication such as, So you won t begin to hurt.

46 44 INCONTINENCE The person may lose control of urine and/or bowel matter as the muscles in those areas begin to relax. Discuss with the hospice nurse what can be done to keep your loved one clean and comfortable as well as how to protect the bed. CONGESTION The person may have sounds of congestion coming from his or her throat or chest, as small amounts of fluids accumulate and cause a vibration noise. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes much discomfort. Gently turn the person s head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain and is normal for the physical decline. INTAKE DECREASE The person may begin to want little or no food or liquid. This means the body is conserving energy for other functions and getting ready for the end phase. Do not try to force food or drink or use guilt to manipulate them into eating or drinking. To do this only makes the person uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. Glycerin swabs may help keep the mouth and lips moist. A cool moist washcloth on the forehead may increase physical comfort. URINE DECREASE The person s urine output normally decreases due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with your hospice nurse to determine whether there may be a need to insert or irrigate a catheter. BREATHING PATTERN CHANGE The person s regular characteristic breathing pattern may change with the onset of a different breathing pace which alternates with periods of no breathing. This pattern is called the Cheyne- Stokes syndrome, is very common, and indicates decrease in circulation in the internal organs. Elevating the head may help bring comfort. Hold hands. Speak gently. EMOTIONAL SPIRITUAL MENTAL CHANGES WITH SUGGESTED RESPONSE DECREASED SOCIALIZATION The person may only want to be with a very few or even just one person. This is a sign of preparation for release and an affirming of who the support is most needed from in order to make the approaching transition. If you are not a part of this inner circle at the end, it does not mean you are not cared about or are unimportant. It means you have already fulfilled your task with him or her and it is the time for you to say Goodbye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission. WITHDRAWAL The person may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of letting go. Since hearing remains all the way to the end, speak to your loved one in your normal tone of voice, identify yourself by name when you speak, hold his or her hand, and say whatever you need to say that will help the person let go. SENSORY EXPERIENCES The person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate a hallucination or drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it s not real to your loved one. Affirm the experiences. They are normal and common. If they frighten your loved one, explain to him or her that they are normal. RESTLESSNESS The person may perform repetitive and restless tasks. This may be caused by decreased oxygen circulation to the brain and body chemistry changes. The restlessness may in part indicate that something is unresolved or unfinished that is disturbing and prevents him or her from letting go. Do not interfere or try to restrain such motions. Your hospice team member will assist you in identifying what may

47 45 be happening and help you find ways to help the person find release from the tension or fear. Other things which may be helpful in calming the person are to speak in a quiet natural way, recall a favorite place, and lightly massage the forehead, reading to the person or playing music. Give assurance that it is OK to let go. UNUSUAL COMMUNICATION The person may make statements, gestures or requests that are seemingly out of character. This may indicate the time is ready for the person to say Good-bye and is testing to see if you are ready to let him/her go. Accept this moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you need to say. GIVING PERMISSION Giving permission to your loved one to let go without making him or her feel guilty for leaving or trying to keep him or her with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are being left behind will be all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it s all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time. SAYING GOODBYE When the person is ready to die and you are able to let go, then is the time to say Goodbye. Saying Goodbye is your gift of love to the loved one, for it achieves closure and makes the final release possible. It may be helpful to lie in bed with the person and hold him or her, or to take the hand and then say everything that you need to say so that afterward you never say to yourself, Why didn t I say this or that to him or her? It may be as simple as saying, I love you. It may include recounting favorite memories, places and activities you shared. It may include saying, I m sorry for whatever I contributed to add tensions or difficulties in our relationship. It may also include saying, Thank you for. Tears are a normal and natural part of saying, Goodbye. Tears do not need to be hidden from your loved one or apologized for. Tears express your love and help you to let go. HOW WILL YOU KNOW WHEN DEATH HAS OCCURRED? The death of a hospice patient is not a medical emergency. Nothing must be done immediately. The signs of death include such things as: No breathing No heartbeat Loss of control of bowel and bladder No response Eyelids slightly open; eyes fixed on a certain spot; no blinking Jaw relaxed and mouth slightly open FAMILY GUIDELINES WHEN DEATH OCCURS We have a hospice nurse on call 24 hours a day, seven days a week. Call Keystone Hospice at: Call relatives and friends. Get help with this and divide the list among all of you. Notify the mortuary of your choice. Family, friends, or Keystone Hospice can assist you with this. NEXT DAY TASKS Cancel services such as meals-on-wheels, volunteers, newspaper subscriptions, etc. Write obituary for local newspaper. Keystone Hospice can provide you with an easy guide to help. Find picture you would like to use for obituary. (optional) Meet with funeral directors to plan funeral. Order multiple death certificates. Death certificates are required for: credit card agencies, Veteran s Administration, pensions, life insurances, and banks. You should request a minimum of five (5) death certificates. Keystone will arrange for equipment pick-up. Pick out clothes for viewing and burial. AFTER THE FUNERAL Notify the Social Security Administration of the death at (800) Call any other pension, retirement services, and/or life insurance. The Keystone Bereavement team will keep in touch with you for a year. Change of address on mail.

48 46 SECTION XI. GRIEF ANTICIPATING GRIEF It is because we have loved that we grieve. Understanding this, we can begin to prepare for what lies ahead. Though we might hope that this terminal illness can be cured, another part of us begins to understand what may seem unavoidable the loss of a loved one. Your bereavement process (pain after loss or anticipating a loss), may have begun before you joined our hospice program. Receiving a terminal diagnosis itself can be a shock. Then, other losses may have followed: independence, control, longrange plans, dreams, and ultimately, the loss of a future together. Anticipatory grieving is a very individual process and everyone handles it differently. It is affected by our early experiences as well as other factors such as your personality, the nature of the relationship, and other circumstances which affect the situation. You might notice changes at this time such as a change in your overall outlook toward life, the loss of the enjoyment of life and a questioning of your faith or understanding. Among these changes, you may experience physical or emotional feelings of depression. Common sensations might include mood swings, social withdrawal, anger, and feelings of unfairness. These feelings might occur as you experience the disease process itself and as you question why this is happening to you and your loved one. Thinking about your upcoming loss may be difficult. Having a coping strategy in place will greatly help you get through this time. It is common to delay taking care of important paperwork, such as wills and funeral plans. However, addressing these processes earlier will make things easier later. If you feel uncomfortable about bringing important issues up with family members, the hospice team may be able to help. Bringing up these difficult issues will not hasten death or change the outcome, and it can relieve much of the tension, uncertainty, and questions that remain when no decisions have been made. Making decisions during crisis can be very difficult. For this reason, we encourage you to complete some of the difficult paperwork and decisions beforehand. One of these is making decisions about whether to have a funeral, a cremation, or burial, or a memorial service. This early planning helps to lessen stress so as to be able to focus on the situation at hand and not try to guess what you or your loved one would have wanted. Other decisions that may need to be made include do not resuscitate/intubate orders and the potential use of nursing homes and more. Planning now will be helpful in the following ways: Bringing family and friends together to clarify questions, opinions, and concerns and to express feelings about the realities of death and grief. Clarifying some of the financial and legal questions that may later arise. Lessening the difficulty of decision making after death helps with stress. Freeing yourself up for focusing on the importance of the person s life. Other considerations: Our medical social workers and chaplains are available to help navigate the business side of the death process. With their knowledge and experience, they can help to you explore each consideration, discuss options and lend general guidance through the process. They can also facilitate the discussion among family and friends. Please know that whatever your needs and choices, our hospice team will support you and provide any assistance we can. AFTERWARDS After your loved one has died, hospice will be keeping in touch with you and your family for at least one year. Our hospice bereavement program will be providing the following services and resources during this time: Information about the grief process and our bereavement program. Memorial services for family and friends. Contact with the bereavement coordinator and/or bereavement volunteers. An experienced, removed person who you can be a good listener.

49 47 GRIEF SUPPORT Talk regularly with a friend. Talking with another is one of the best things you can do for yourself. Carry or wear a linking object. Carry something that reminds you of the one who has died. Create a memory book. Compile photographs which document your loved one s life. Add other elements. Recall your dreams. Accept your dreams for what they are and see what you can learn from them. Tell people what helps you and what doesn t. People around you may not understand what you need. So tell them. Ask for a copy of the memorial service. Some people find these thoughts provide even more help later on. Plant something as a living memorial. Plant a flower, a bush, or tree in memory of the one who died. Spend time in your loved one s space. Do this if it brings you comfort. You will know what is right for you. Journal. Write out your thoughts and feelings. Don t censor what you write just be as honest as you can. Purchase something soft to sleep with. Select something that feels warm and cuddly. Write the person who has died. Write letters or other messages to your loved one. Consider a support group. Spending time with a small group of people who have undergone a similar life experience can be very therapeutic. You can discover how natural your feelings are. You can learn from others. Light a candle at mealtime. Pause to remember them as you light it. Create a memory area at home. In a space that feels appropriate, arrange a small tableau that honors the person. Use your hands. Knitting, crocheting, carving, woodworking, polishing, jigsaw puzzles, painting, braiding, etc. Begin your day with your loved one. Recall lessons this person taught you, gifts he or she gave you. Invite someone to be your telephone buddy. Ask their permission to call them day or night. Structure alone time. A large part of grieving involves what goes on inside yourself your thoughts, feelings, memories, your hopes and dreams. Listen to music. Choose music you believe will help at any given moment. Do something your loved one would enjoy. Remember the one who died in your own unique way. Screen your entertainment. Some TV shows and movies are best not viewed when you re deep in grief. Engage your soul. You ll want to do this your own way. Some people meditate, pray, spend time alone in nature. Allow yourself to laugh. You ll be consecrating their love of life, and your own, too. Allow yourself to cry. Crying goes naturally with grief. If you feel like crying, then cry. If not, then don t. Create or commission a memory quilt; a wall hanging or bedroom quilt that remembers their life events. Read how others have responded to a loved one s death. If you d like to, look at the ways others have done it. Take a day off. When the mood is just right, take a one-day vacation. Just make it your day. Invite someone to give you feedback. Select someone you trust. Give yourself rewards. Be kind to yourself in grief. Do those things for yourself that you really enjoy. Do something to help someone else. Step out of your own problems from time to time. Write down your lessons. Your grief experience will have much to teach you. (taken from website, by Jim Miller)

50 48 SECTION XII. ADMISSIONS ADMISSION AGREEMENT HOSPICE ELECTION PATIENT NAME: MR#: DATE: This agreement is entered into by and between KEYSTONE HOSPICE (hereafter called Agency) and (hereinafter called Patient). This agreement is entered into pursuant to a desire by Patient to obtain hospice services. I request admission to KEYSTONE HOSPICE and understand and agree to the following conditions INFORMED CONSENT I understand that the Hospice program is palliative, not curative, in the goals and treatments. The program emphasizes the relief of symptoms such as pain and physical discomfort and addresses the spiritual needs and the emotional stress which may accompany a life-threatening illness. I understand I am encouraged to participate in the development and implementation of the approved plan of care and that Hospice services are not intended to take the place of care by family members or others who are important to the patient, but rather to support them in the care of the patient. With the help of Hospice, the person designated the caregiver will provide around-the-clock care to the patient in their place of residence. If twentyfour hour care is not available, the caregiver will arrange for another to provide it. The caregiver will also participate in decisions about the care provided to the patient. The Hospice Interdisciplinary Team supplements rather than replaces care provided by the family or Care Center Staff. I accept the conditions of KEYSTONE HOSPICE as described, understanding that I may choose not to remain in the program and that Hospice may discharge me from the program if hospice care is no longer appropriate. This means there will be no further liability to me or to KEYSTONE HOSPICE. I understand, however, that I may request to be readmitted at a later date. I have been able to discuss the above conditions with a member of the Hospice staff and have had my questions answered to my satisfaction. CONSENT FOR TREATMENT The undersigned Patient or Patient s legally authorized representative hereby consents to any and all examinations and treatments prescribed by Patient s physician (or hospice physician) rendered by the Agency s licensed nurses, physical therapists, occupational therapists, speech therapists, registered dietitians, social workers, spiritual counselors, Hospice Aides and volunteers. FINANCIAL AGREEMENT In consideration of the mutual promises and obligations related to treatment rendered to Patient by Agency, it is agreed as follows: Payment Responsibility. It is understood that for Hospice patients, the agency assumes financial responsibility for medications and/or durable medical equipment and medical supplies related to the terminal illness. The Patient and/or Patient s agent assumes financial responsibility for all other authorized charges. The agency in accordance with this agreement shall assist Patient in obtaining financial assistance from third party payers such as Medicare and private insurers. Pharmacy Services. I acknowledge that I have the right to direct a pharmacist to dispense a prescription using the brand my physician prescribed instead of a generic drug product. I also understand that generic drug products generally cost less than brand name products, but the price differences vary from prescription to prescription. I hereby consent and agree that, if allowable under state law, any pharmacist who dispenses any of my prescription drugs may select a drug product that is generically equivalent to the brand prescribed by my physician, unless I submit to Hospice a written request for a brand name product. Termination. Except for Medicare eligible hospice Patients, the Agency upon due notice of no less than thirty days, may terminate services for lack of payment for its services. In addition, the Agency may terminate services when in its sole medical judgment, determines there is no longer any reasonable expectation that it can meet the Patient/ family s need.

51 49 HOSPICE SERVICES Routine Home Care. I understand that hospice services are delivered primarily in the home (which may include a nursing home) provided by a team of hospice professionals, staff and volunteers. These services are available both on a scheduled basis and as needed. I understand that these services may include, as set forth in the hospice plan of care: nursing, physician care, social work, spiritual, nutrition and bereavement counseling, Hospice Aides/ homemakers, medical supplies, physical therapy, occupational and speech language therapy, and medications prescribed for relief of pain or discomfort. General Inpatient Care/Inpatient Respite Care. I understand that inpatient hospice care and inpatient respite care are provided in an inpatient bed when it is deemed necessary by the hospice interdisciplinary team. I understand that hospice general inpatient care is designed for short-term stays with the goal of stabilizing the patient and family emotionally and physically so the patient can return to home. I understand that inpatient respite care is designed to provide brief periods of respite for the family or primary caregiver while the patient receives hospice care in an inpatient bed. Continuous Care. I understand that continuous care (a minimum of 8 hours of care in a 24-hour period) may be provided in a patient s home when it is deemed necessary by the hospice interdisciplinary team. I understand that continuous care is designed for short-term periods to manage acute medical symptoms with the goal of stabilizing the patient. I understand that under the Medicare Hospice Benefit, I am entitled to hospice care, which consists of two 90-day periods and subsequent 60-day periods of unlimited duration. The Hospice interdisciplinary Team evaluates recertification for continuation of hospice care at the end of each benefit period. I understand that I am responsible for the cost of care for my terminal illness if I seek care beyond what is considered medically necessary by the hospice interdisciplinary group and documented on my plan of care. I understand that I may revoke the hospice benefit at any time by signing a statement to that effect, specifying the date when the revocation is to be effective, and submitting the statement to KEYSTONE HOSPICE prior to that date. This revocation constitutes a waiver of the right to hospice care during the remainder of the current election period. MEDICARE HOSPICE BENEFIT ELECTION As a Medicare Part A beneficiary, I hereby elect KEYSTONE HOSPICE as my sole provider of hospice care. I understand the hospice program to be palliative, not curative in its goals and treatment, which the program emphasizes the alleviation of physical symptoms, including the pain, and the identification and meeting of emotional and spiritual needs that the patient and family may experience related to the terminal illness. I understand that while this election is in force, Medicare will make payments for care related to this illness on to the physician designated below and to KEYSTONE HOSPICE, and that services related to this illness provided by hospitals, home health agencies, nursing homes, and any other company or agency will not be reimbursed by Medicare unless specifically ordered and authorized by KEYSTONE HOSPICE. I understand the services not related to this illness will continue to be covered by Medicare along with hospice benefits. HOSPICE ELECTION EFFECTIVE DATE: ADVANCE DIRECTIVES I have been provided the following information regarding advance directives: Informed of my rights to formulate an Advance Directive. I am not required to have an Advance Directive in order to receive medical treatment by any health care provider. The terms of any Advance Directive that I have executed will be followed by any health care provider and my caregivers to the extent permitted by law. That patient has an Advance Directive: Yes No Copy Received: Yes No Name and address of agent

52 50 RELEASE OF INFORMATION I understand that KEYSTONE HOSPICE may need to obtain medical records and related information from other health care agencies, insurance companies, and health care benefit plans in order to assure continuity of care and proper reimbursement. I authorize the above persons and entities to release to this hospice and its representative medical records and related information necessary to be helpful to the provision of hospice care. I also authorize this hospice and its representatives to release medical records and related information to others for the purposes of my health care, administration and management of my health care (including utilization review), or processing and obtaining payment for services and supplies rendered to me. I understand and agree that these authorizations specifically include my permission and consent to release any information regarding a diagnosis of AIDS or results of Human Immunodeficiency Virus (HIV) tests to the extent permitted by law. I authorize the Hospice to take photographs for purpose of identification and care management (i.e. wound care). A photocopy of this authorization shall be as valid as the original. RECEIPT OF INFORMATION Hospice services have been explained to me; I have been given the opportunity to ask any questions I have concerning the hospice program of care, and my questions have been answered to my satisfaction. I have been provided the following materials: A copy of Patient s Rights and Responsibilities Written materials explaining a patient s legal rights to accept or refuse medical treatments and to prepare and advance directive for health care. ACKNOWLEDGMENT I acknowledge and agree to the terms and conditions described in the following: Informed Consent and Treatment Authorization Financial Agreement Advance Directives Notices of Privacy Practices Medicare Hospice Benefit Election I have received and understand education on my current medication, and common Hospice medication their use, dosage, frequency, route, common and emergent side effects I have received copy of Patient/Family Orientation for Hospice Care Booklet and Admission Agreement The physician I have chosen to serve as my attending physician is: Patient s signature Date Responsible Person or Legal Guardian Signature Witness Signature/Agency Representative Date Printed Name and Relationship of Person above Patient unable to sign due to:

53 51 CONSENT FOR PRIMARY CAREGIVER I, (print name) agree to accept the role of primary caregiver (s) for (print Name) who is requesting admission into Keystone Palliative Care and Hospice program of care. The commitment and responsibilities of this role and of Hospice care/services are described below. I understand that the goal of Hospice is not to cure the terminal illness but to provide symptomatic and supportive care in this final phase of life and to the extent possible this will occur in the patient s residence. I understand the Hospice Interdisciplinary Team will provide me with education, training and support in the management of the patient s physical, emotional, psychosocial and spiritual needs. I understand the Hospice staff will provide emotional, psychosocial and spiritual support to help me cope with my caregiver responsibilities, the eventual patient s death and by bereavement. I understand that in my role as a primary caregiver I will be responsible for meeting or arranging for he patients 24 hours a day care needs. I will arrange for care in my absence. I understand the Hospice medical record will contain information about me. Every effort will be made to keep this information confidential. I authorize this information to be released to the attending physician and other appropriate health care providers for the continuity of the patient s care. I also authorize the release of this information, as needed, to prove insurance claims. I understand Hospice Services are primarily provided on a prearranged, appointment basis but crisis or consultation assistance with Hospice is available 24 hours a day, 7 days a week. I will consult Hospice in case of any emergency. I understand to receive full benefits of Hospice Care it is important for me and the patient to make our needs and concerns known to the Hospice Interdisciplinary Team and to participate in the planning for care. I understand I may choose to change my mind about this method of care and withdraw from this primary caregiver agreement. However, I agree not to do so without giving advance notice to the patient and Hospice, so another primary caregiver can be arranged for. I have received the Hospice Admission Booklet. At this time I believe I understand the responsibility of being primary caregiver, the nature of the patient s illness and the role of Hospice care. My questions about the Hospice Program have been answered to my satisfaction by: Keystone Hospice Staff Representative Patient ID # Primary Care Provider Date Witness signature Date

54 52 NOTES

55 NOTES 53

56 54 NOTES

57 NOTES 55

58 To our Veterans Thank You! For your service to our Country, and our Families HOSPICE STAFF Nurse: Medical Director: Hospice Aide: Social Worker: Chaplain: Volunteer(s): IMPORTANT PHONE NUMBERS Primary Care Physician: Pharmacy: Poison Control: or 911 Medical Equipment: Family: 1159 E. Iron Eagle Dr., Eagle, Idaho Fax: CALL US ANYTIME, 24 HOURS A DAY PLEASE DO NOT CALL 911 BEFORE YOU CALL US.